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My Lords, I declare my interests as noted in the register, particularly my interests in accessible transport, housing and charities.
The lives of disabled people are often challenging. We rightly work hard to try to meet those challenges, and many disabled people say that we do not work hard enough. But the main reason I called for this debate today was to focus on the positives. Over the past 50 years, there has been an enormous improvement in the public’s attitude to disabled people, public understanding of their disability, and provision for their needs.
Sir Bert Massie repeated a story of being told in a restaurant. “I’m sorry, we don’t serve wheelchairs”, only for him to reply, “That’s okay: I don’t eat them”. That would not happen today, and that is something to celebrate, but, as we have seen those improvements over the past 50 years, we should now be optimistic that for the next 50 years we will promise even more.
A charity’s main aim should be to shut itself down. It should strive to achieve its mission, fulfil its special purpose and find that there is no reason for it to exist any more—but this is rare, if not unknown. The perhaps mythical charity for the relief of the destitute of Beverly Hills might have been such an example.
In this House, and in politics generally, there are quite enough problems to keep us busy, and so often the important gives way to the urgent. Setting a date of 50 years hence for this debate, we can start to think about the important. It gives us the opportunity to talk about a tantalising time when many of the urgent problems have retreated, in the hope that that might reveal the important ones left exposed on the beach of debate.
One charity that considered the possibility of being redundant was RADAR, when it was run by the late Sir Bert Massie, whose enjoyable autobiography was recently published. I am told that RADAR produced an annual report for 2030 looking forward in that way. Sir Bert imagined a world in which disability discrimination no longer existed—indeed, when no discrimination on spurious grounds existed. But the original idea for this debate was sparked when I discussed housing matters with a fine social housing provider called Habinteg, known to many of us in this House. It should be congratulated on its 50th anniversary, but did it imagine what the world would be like now when it started? I am not sure that there were many disabled Members of this House 50 years ago, and public transport was wholly inaccessible. Life is better now—still bad for many people, no doubt, but also better for very many.
Many noble Lords present will—but I personally shall not—see the world in 50 years’ time, when I would be approaching 115, but what will be the nature of disability then? Average longevity has been growing for years, so perhaps a life expectancy of 120 will be ordinary. We can hope to see ways of looking after the elderly improve, but perhaps the frailty that so often comes with age will grow further. Will dementia be preventable by then? Research is certainly progressing well, and there may turn out to be an infectious agent of some sort that can be prevented, just as we have discovered that many cancers are started by viruses.
Will we have solved some of the other problems of extreme old age? In every generation, people have felt that technology has passed them by, whether that be transport or iPhones. The older generations can now handle—just—the mystery of computers, but it has always been the case, and probably always will be to some extent, that technology will leave some of the older generation behind. It means that there are so many people alive today who are isolated by technology—who, for instance, cannot handle a ticketing system that is online only or that restricts cheaper tickets to online only.
Isolation makes people miserable. It may be one of the big challenges of the future. We should always be grateful to be Members of this great House, because so many deserving people do not have our privilege of having friends to disagree with. Perhaps, when our successors are debating the installation not of 5G but of 50G, they will convince the teenage designers of that system to design it with older people in mind. Better communication should reduce loneliness, but does technology always achieve this? I can hope only that the sheer numbers of older people will mean that that demographic group is a commercial opportunity.
Many scientists believe that, were people to engage in a healthy lifestyle throughout their lives, they could live for well over 100 years in relatively good shape, with preservation of cognitive ability. In a book entitled The Blue Zones, Dan Buettner studies communities around the world where people frequently live past 100. They stay physically active, eat well and usually never smoke—not even on the terrace. Crucially, they also enjoy loving, purposeful relationships throughout their lifespan. Someone can be physically well but lonely; loneliness clearly increases the loss of cognitive function and accelerates costly, preventable decline.
Technology can isolate people, but it also has enormous potential to alleviate loneliness. For instance, we can be sure that autonomous cars will be routine in the next few years. That could mean much more independence for those who are currently dependent—but when will we see autonomous ambulances with perhaps only one nurse to look after the patient while the ambulance drives itself? Autonomous cars may enable those with learning difficulties to travel as easily as everyone else, but what will happen without the contact with other people that happens on a bus? Will buses find themselves priced out of existence? Perhaps the autonomous taxi will be just a haven from increased crime.
Again, looking 50 years ahead means that we can start to identify the important things that we hope will not become urgent, because we know that a lot of costs are associated with disability. Lifts, special bathrooms and automatic door-openers are all expensive and all need electricity and maintenance. Whether they will get proportionately cheaper in 50 years’ time is an open question, but what is certain is that extra costs will exist, and I hope that all parties will accept paying towards them.
The subject of human helpers employed by many disabled people is more complex. With the growth of free trade—and, I hope, free immigration—around the world, I would expect the average wage of unskilled people to converge, so it will not necessarily be advantageous for British disabled people to employ foreign helpers. Will we see robots help instead? We see this already in places such as Japan, which has low levels of immigration.
One thing is predictable: in 50 years’ time, the promised Green Paper will actually have been published, and at least 50% of houses will have already been built to the lifetime homes standard. That is because the Government will have accepted the recommendation from all sides of the House to make it mandatory. That the majority of all houses should be accessible seems easy to me. We are winning the argument; I believe that building accessible housing will be seen as helpful not only in a practical sense but in an economic sense too. Given the number of times a house will change hands over the course of its existence, there is a good chance that a resident over that timeframe will need wider doors or accessible plug sockets. Building those things in at the start will be more economical than making alterations over a number of years.
Technology in healthcare can help, too. A few years ago, the American company Theranos popularised the idea—albeit perhaps fraudulently—that it should be possible for every patient to take a small drop of blood by themselves, which should reveal all the health markers that are so hard to find now. It is likely that another company might produce this in the future, meaning that every person could monitor their health daily with complete accuracy at trivial cost. All infections and diseases will be caught early, probably leading to much less suffering. Such technology might also, almost unbelievably, reduce the cost of our National Health Service. For those with disabilities, being able to track other health issues easily and cheaply will be of enormous benefit.
State borders will not be limitations on these benefits. For medicine in resource-limited countries, telecom-munication and telemedicine will be very helpful. It is happening today. Pathology reports and X-ray images can be sent to experts, and we can get second opinions through a group of physicians who volunteer to help in this effort. Surgeons can now operate remotely, thousands of miles away. So, looking forward, will it be easy for UK doctors to routinely treat patients in third world countries, and will it be easy for doctors trained in South America to take on patients in the UK? How will we sort out prescriptions written in India and delivered in Westminster? Perhaps with prescriptions dispensed by Amazon—who knows? Treating conditions that might exist alongside a disability should be easier for those in the UK and overseas, which is a welcome prospect. Again, having a 50-year perspective is a useful framework for working out what issues might be important, so that we can start to use technology to tackle them.
I have addressed how technology can be used for good, but I have also acknowledged that it can isolate people. I think that loneliness might be the biggest long-term challenge for improving the lives of disabled people. The Government have, to their immense credit, recognised the problems that loneliness can cause. They have even given a ministerial role to the task, which my honourable friend Mims Davies MP currently occupies. The Government’s loneliness strategy was launched in October last year, and there is much to recommend in it. The strategy recognises the potential that technology has to reduce loneliness as opposed to exacerbating it, and it also seeks to discuss loneliness in classes at school so that children can learn about its impact.
While I welcome the Government’s willingness to tackle loneliness, it is also true that the best solution is the long-term care and support provided by families and loved ones. The Government can and should help when someone is truly alone, but they cannot and should not replace a family. There are thousands of family carers across the country, many of whom are balancing jobs and young families at the same time. This is a tremendous resource not just for the lonely person but for the country, and we should be immensely proud of these people. I have noticed an increase in award ceremonies and the like celebrating the role of family carers, and that is absolutely right. They are national heroes and may be the secret to making the next 50 years even better than the last.
My Lords, it is a pleasure to congratulate the noble Lord, Lord Borwick, on securing this debate and also on an excellent speech, which I am glad to follow. When we speak about minorities, we all too often lose sight of the fact that disabled people are the largest minority group in our country. Out of the UK population of 66 million there are, according to the charity Scope and the Family Resources Survey, 13.9 million disabled people. Despite that, disability discrimination is still considered by the public, the media and in some cases the Government to rank below racial, homophobic and religious discrimination.
Your Lordships’ House has led the way in championing the needs of disabled people, and we can see evidence of that in the speakers’ list for this debate. It was a privilege to be asked to serve on the Select Committee on the Equality Act 2010 and Disability under the excellent chairmanship of the noble Baroness, Lady Deech, in the 2015-16 Session. Many of the issues that I suspect will be raised in the debate today were covered by that Select Committee inquiry, and I would gently suggest to the Minister that it would be helpful if she and her department were to go through the 55 recommendations made in that report and see how many of them still need to be implemented.
I should at this point declare my interest as a vice-president of the charity Level Playing Field. I have been involved with the charity for 12 of the 20-plus years that it has been campaigning for improvements in access to sports stadia for disabled supporters. The charity gave me tremendous support when I took a Private Member’s Bill, the Accessible Sports Grounds Bill, through this House in 2015. Virtually everyone who spoke in its Second Reading debate was strongly supportive, particularly of the principle that each stadium should follow accessible guidelines and improve the experience for disabled people attending matches. As is the fate, sadly, of almost every Private Member’s Bill that starts life in this House, mine made no progress in the other place—but there seems to be little doubt that the pressure put on the football authorities by your Lordships helped to secure a remarkable change of approach. Access is now high on the agenda for clubs and sports governing bodies, and clubs have a clearer understanding of what they need to achieve.
Level Playing Field tells me that the Premier League pledge has resulted in the biggest change in facilities for disabled fans since the league was founded in 1992. Of its 20 members, 17 now meet the accessible stadia guidelines for wheelchair user spaces, and over 1,000 more spaces have been provided across the Premier League since the pledge was signed. There have also been 16 changing places and 10 sensory rooms created. All Premier League clubs have identified easy access and amenity seats, and more disabled away fans can now sit alongside their fellow supporters.
As recently as 2016, after the publication of the Select Committee report, I was still very critical of the lack of progress. While there is still a lot more to be achieved in the Premier League—including ticketing processes, sight-lines, persistent standing, appropriate audio-descriptive commentary and away-match experiences —I am pleased to acknowledge how much the situation has got better. I commend six clubs in particular where the pledge has led to really significant improvements: Everton, Chelsea, Watford, Newcastle United and our two proud competitors in the European Champions League final, Liverpool and Tottenham Hotspur. They all meet the accessible stadia guidelines.
The English Premier League pledge has also had a beneficial effect on the Football League. Championship clubs now have two years following promotion to meet the accessible stadia guidelines. Some good work is being done in Leagues One and Two and lower down, but there are inconsistencies that need to be addressed. The same applies to sports such as rugby, cricket, tennis and horseracing, which are following the Premier League’s example in assessing their own facilities and making improvements.
While these advances are very welcome, there is an overriding need to create a more inclusive culture in society as a whole, so that disabled fans enjoy a genuinely equal experience. We shall therefore need clear legislation, such as my proposed Private Member’s Bill, that binds sports clubs by the accessible stadia guidelines as part of their licence. There also needs to be an appropriate governing body to oversee and manage these arrangements.
Looking more widely, we should review the disposable income of disabled people. Scope estimates that on average there are additional costs of £583 per month to being disabled. Looking ahead, we can anticipate that during the next 50 years there should be technology improvements, increased life expectancy and more leisure time, as the noble Lord, Lord Borwick, has described to us. Disabled people are entitled to expect improvements to public transport links, including equal access for wheelchair users travelling on trains and buses and in taxis.
I also hope there will be better understanding of hidden disabilities, including mental health, learning disabilities and dementia. These will need more public awareness and better staff and service provider training and information. We shall need to recognise that an ageing population will mean an increased demand on existing facilities.
Finally, I will say a word about one of the most unpleasant aspects of the debate on disabled people. I refer to the growing incidence of abuse and discrimination. In the past 12 months, reported incidents of hate crime have increased in the UK by 33%. According to police figures there were 5,342 reported cases in 2017-18, compared to 4,005 in 2016-17. There is evidence of significant underreporting of cases. Many sports fans, for example, do not report what they see or experience due to fear, uncertainty and not having confidence in anything eventually being done about such incidents. That needs to be tackled by proper information-sharing arrangements, centralised data sharing, focused research, measuring change, and players and fans speaking out and not tolerating this.
There is a lack of consistent messages about what to do in a situation where a hate crime arises, and there has to be united and consistent action that makes it clear that any form of discrimination is not tolerated. I would like to see a charter to which everyone involved signs up—sports governing bodies, supporters’ groups, clubs, charities and the Government. In some cases, the constitution of fan groups will need to be amended to make it clear that discrimination against disabled people will not be tolerated. That needs to apply equally to social media and online forums and to written constitutions and rulebooks. If something is not acceptable on the street, it is not acceptable online either.
My Lords, when it comes to disability, the first thing that strikes me is how incredibly wide the field is. There is a grave danger that when we talk about disability we start to talk about a bit of it. I am afraid that virtually all the lobby groups—although it does not happen so much in this Chamber—tell you that their particular problem is the worst. They say, “You don’t understand. The problems are so great”, usually when you are talking about someone you are helping and supporting in that group.
We have achieved things in this field. I have been here so long that I can remember the initial Disability Discrimination Act. It was one of the first Bills that I was allowed to take a leading part in, if noble Lords know what I mean. Then, the whole of the lobby spoke with one voice. We must try to get back to that. The way we do that is to accept the themes that run across. One is the need for independence and to be involved in the whole of society. With the modern world and technology, that is getting easier. It is at least technically possible that it will become easier all the time. That is where we should look.
However, the problem is how we facilitate that potentiality, because many parts of the system at the moment seem to be designed to make that as problematic as possible. Now might be a good time to remind the House of my declared interests as president of the British Dyslexia Association and chairman of Microlink, which deals with this for a fee—my card will be available to anyone who wishes to speak to me later on.
Yesterday, in the first Question of the day, I asked whether we could accept one form of identification for dyslexics, who are one of the biggest disability groups although not the biggest, throughout the whole education system. We discovered that we had decided to have two forms of identification, one before you are 16—it used to be 18—and one afterwards because the lifetime condition would change. People did not understand that the way you cope with these conditions might change, but the condition itself does not change. It is there. That is true of all the neuro-diverse conditions. There is a lack of understanding. The two parts of the education system were incapable of speaking to each other. They had to be dragged to have their heads banged together. I thank Ministers again for helping me in that process. We must make sure that we co-ordinate. All the potential advantages will be stifled if we do not.
Passporting of identification and problems would help in virtually every field. There is a diagnosis, it is carried through, and that is how we deal with it. There is identification at school, then the disabled students’ allowance, through to access to work; I have looked at that path myself. How do you make sure that one diagnosis says that you go through? People will be able to give examples of this in other fields but, unless you carry it through seamlessly, you will have problems.
Why does that matter? If you want to make somebody economically active and be of benefit to society, you make sure that they have the opportunity to gain an education, qualifications and a job so that they can function in the outside world. There is a question over whether we should let people bear some of the extra costs, which have already been mentioned, but the state should help at certain points. There might be agreement that there should be some assistance from the state but, if the person is employed in their own right, the level of burden falls.
The noble Lord spoke about isolation. If you happen to be in work when you are diagnosed with a disability, one of your major social interaction points is removed, at least to an extent. However, if somebody at the workplace sees that the person with a certain physical condition or disability can function, suddenly a barrier is removed. It is about getting the person into that situation. One of the greatest lessons I have learned is that you encourage that to happen by making sure that it is as easy as possible to provide assistance.
We have discovered that slightly changing a line manager’s budget is one of the greatest barriers to making sure that the right assistance is provided in the workplace for a person identified as disabled. That is often the case with a late-onset disability. Someone might say to their employer that they have rheumatoid arthritis and will need a new chair and a new keyboard. The employer asks, “How much will that cost? Wait a minute. I want to paint the office and upgrade the entire computer system. How am I going to get the money for that?” If the assistance comes from elsewhere, things will happen quickly. The employer will then find that they do not have to deal with somebody, possibly with mental health problems, who turns up late, and they will not have to face legal fees for constructive dismissal and so on. Things become easier and quicker if there is identification and you are told that there is a comparatively straightforward way of dealing with the problem. All disability groups will benefit if we encourage government to do that.
One major barrier arises if people say, “That’s not what we do and that doesn’t concern me”. That happens largely because many people—usually those with the less obvious forms of these conditions—never identify themselves and carry on underachieving, not getting promoted and hiding in corners. We have to embrace the difficulties and try to get the potential out of this group. A great deal of time, energy and money can be saved by doing that, and the lives of the people in those groups who are around you will be improved.
The Government should take on board that people should be encouraged to self-identify, and it should be communicated to them that any problems they have can easily be solved or at least mitigated. That is what I would encourage the Government to do. Looking 50 years into the future, if we properly implement the solutions and take the practical steps that we have identified now, a great many of these problems will, if not disappear, at least become rather more manageable.
My Lords, I congratulate my noble friend Lord Borwick on bringing this very important debate to the Chamber today. I am very pleased to follow the noble Lord, Lord Addington. The point that he made about the breadth of disability is very important because, for many people born with a disability, it will impact on them for their whole life. People might become disabled due to disease or accident, and then there is the frailty of old age. We must not forget parity of esteem and make sure that we recognise mental health and cognitive impairments, which sometimes also link to a physical disability. Therefore, it is a broad spectrum.
I welcome the prospect of what artificial intelligence will bring to that very wide and diverse group. Medical genetics, biopharmaceuticals and personalised healthcare offer us all—particularly those in the disability group—an opportunity for increased support and, in some cases, even a cure. But we should not focus only on machines and technology; as has already been mentioned, people are involved in caring for other people with a disability. We must make sure that people are at the forefront: people who are properly trained, who understand the nature of the disability, and—if I may say so—who are rewarded in an appropriate way for the important work that they do.
I want to talk about money—I know it is vulgar but I will do it, even in the House of Lords—and by that I mean money from the Government and money that people contribute personally to disability care costs. I shall speak first about money from the Government. Yesterday, the Alzheimer’s Society, of which I must declare I am a vice-president, announced that it believed the Government should provide a dementia fund for people with a diagnosis of dementia. People living with dementia face higher charges for care than those with other conditions, many of which allow for free care on the NHS. This is due to a lack of social care funding.
No one should face increased costs from developing dementia. Through the Green Paper on social care, which we are yet to see, the Government must ensure that people with dementia no longer face a disproportionate financial responsibility just because of the condition that they have developed. It is a disease. There are 850,000 people living with dementia in the UK, and that figure is expected to rise to more than a million within the next two years. The progression is rapid. The system of support for people living with dementia is unfair, unsustainable and in need of a long-term overhaul to ensure that they receive affordable, high-quality and appropriate care. Despite living with a health condition just like people with cancer or diabetes, people with dementia get most of their support from the social care system and do not receive most of it free at the point of use.
According to research by the Alzheimer’s Society, people with dementia typically pay £100,000 in care costs, with 15% to 20% higher costs than people without a complex condition, and in some cases more. There were 70,000 avoidable hospital admissions of people with dementia in 2016-17; this represents an increase of 70% in the last five years. Although the Alzheimer’s Society is looking to the Government to provide a dementia fund, noble Lords can therefore see that adequate provision would create savings throughout the health and social care system. Training for those in adult social care who interact with people with dementia is also really not up to par; it is not up to tier 2 of the dementia training standards framework. I hope that will be addressed when we eventually see the Green Paper.
Dementia costs the UK economy £26.3 billion per year, an average of £32,250 per person; that is enough to pay the energy bills of every household in the country for a year. But the people affected by dementia shoulder over £17 billion of care costs—an extraordinary amount that represents two-thirds of the total costs. It would take someone around 125 years to save for their dementia care costs if they saved at the same rate as for their pension. There is a need for the Government to consider very seriously this request from the Alzheimer’s Society for a dementia fund that will assist with increased training and the financial costs that the public bear.
The other area I want to touch on is money and the individual. All Governments, of all persuasions, in recent years have failed to take the opportunity that the tax system could offer to those with dependants who have a disability.
We can talk about many issues here. I declare an interest as a vice-president of the National Autistic Society, and I have raised the subject of autism on the Floor of both Houses for many years. I have a very personal family interest in the subject. Regarding autism or any other disability, we spend a lot of time talking about education, social care and getting into employment, all of which are incredibly important, but when you talk to parents of a child with a lifelong disability you find that the one thing that haunts them is, “What happens to that child when I am no longer here?” It does not matter if the child is four or 40.
There are parents around the country whose children, including adult children, have many different disabilities, and they would quite willingly make provision for their child in their own lifetime, to make sure that that child or dependant was able to survive to a more suitable standard of living and in a more sustained way when their parents were gone. Yet we have inheritance tax rules in this country which have said for decades that under the lifetime gifts rules you can gift only £3,000 per year, and even if you are able to make a substantial gift to a child to make provision for them for later on, you have the difficulty of the seven-year rule. I know there are trusts. I have looked at trusts; I have spent a lifetime studying them, and I have to say that solicitors do very well out of them. I will say no more than that. Sorry, I am looking at one or two lawyers around the Chamber. Some are nodding. How very honest of them.
When the Government look at inheritance tax and taxation generally, could they please look at people with responsibilities for disability? Can we not change the rules so that such people are not penalised, but are able to take the opportunity to use money that they themselves have earned to make provision? Many of them are very willing to do so.
My Lords, I too congratulate the noble Lord, Lord Borwick, on knitting together two very different issues: the here-and-now problems that disabled people have in their everyday lives and the potential for improved treatment and outcomes in the next 50 years.
If we look back 50 years, there are many life-enhancing technologies that were not available then, such as hip and knee replacements, voice-activated software and computers themselves, while disabled access to many public buildings was impossible, with few accessible toilets. I do not think that the terms “autism” and “dyslexia”, both of which we have heard about this morning, were as well recognised then as now, and mental health problems were often hidden. In Britain, 22% are reckoned to live with a disability—or 19% of working-age people—meaning, in UN terms, that they have poorer health, lower educational attainment, fewer economic opportunities and higher rates of poverty.
It is refreshing to be asked to consider what the future for disabled people might look like in 50 years’ time, although we should not get carried away with thinking that today’s problems will have melted away. In the medical field, there will undoubtedly be all kinds of exciting breakthroughs—such as, for example, the amazing technology, now in its infancy, that allows some people with spinal cord injuries to begin to learn to walk again. We also hear that artificial intelligence can help blind people and PowerPoint can help deaf people.
However, it will probably be all the things that help disabled people to live independently that will make the most difference to the greatest number. That means not living in residential care but having help to get out and about; to work, if necessary; or just to live a normal life. Yes, there will definitely be sophisticated electronic devices to help with this, and in 50 years’ time perhaps everyone will have some form of smart home technology. But are smart devices really going to supplant personal assistants or carers? A great number of disabled people in 50 years’ time will be very elderly, like the noble Lord, Lord Borwick, will be. I cannot see technology being the sole answer for them, as he said. I hope the Department of Health and Social Care has factored this into its calculations.
I join with others in saying that it is shocking that we have not yet seen the Government’s plans for social care, which are so urgently needed. Unless some serious training and recruitment is done, there will not be nearly enough care workers to cope with the growing demand for home care, particularly if Brexit goes ahead. How care is paid for is, of course, the burning question that must be tackled, as is sorting out the fuzzy and unsatisfactory boundary between NHS continuing care and social care.
But before I leave the world of assistive technology in the home, I hope in time that it can be harnessed to enable far more disabled people to be employed. I hope it is something that work coaches at the Department for Work and Pensions are exploring right now. Far more attention also needs to be paid straightaway to the provision of both accessible and adaptable homes, and wheelchair accessible homes, which are needed now as well as in the years to come. That is something that the noble Lord, Lord Borwick, touched on when he praised Habinteg, the housing association for disabled people. As for transport, perhaps we will all be riding in driverless cars in 50 years, although I find that a terrifying thought. “Who will help us in and out?”, I wonder.
So what would make a difference to disabled people’s lives going forward? I envisage a world where there are more hydrotherapy pools for those with limited mobility—I hope that the noble Lord, Lord Luce, will touch on this when he speaks; where wheelchairs and scooters have long-life batteries for travelling good distances; where most restaurants, cafés and shops are accessible; and where a lot of good hotels, far more than now, have electronic beds and hoists. Surely these things could be available in far less than 50 years.
Also by then, we should have far more disabled people not just in employment but in positions of power and influence as local councillors, school governors, mayors, CEOs, MPs, Peers, judges and, yes, government Ministers. I know that the noble Lord, Lord Holmes, is on the case. We again heard about that today at Questions. Let us mandate all local authorities to have an access officer who has a disability.
To sum up, society must be eternally vigilant over the needs of disabled people; otherwise, we risk the clock going backwards, however good the technology. Being disabled is very expensive and probably always will be. In 50 years’ time, life may well be better for all disabled people, but only if those in positions of leadership always involve disabled people themselves in what they really need and what really works for them.
I thank the noble Lord, Lord Borwick, for tabling this debate today. He has been a great friend of disabled people, championing developments in housing, transport and deaf children’s inclusion in education. I am also glad that he mentioned Bert Massie, an exceptional disabled person whom I had the pleasure of working with from when I was about 22. We worked together on the Disability Rights Commission. That body probably drove some of the best changes in disability equality that this country has seen. He mourned its closure, as I do. He was a disabled person, he worked with disabled people and together we were able to ensure that the Disability Discrimination Act was implemented. Things are going a bit cold now.
This House has a long history of working with disabled people and furthering our causes. Great pioneers, such as the late Baroness Felicity Lane-Fox, Lord Ashley, Lord Morris, Lord Rix and Baroness Darcy de Knayth, are but a few. We have gone from being hidden away and cared for by charities, to being citizens with equal rights enshrined in legislation, within a matter of 50 years.
With the passing of the Disability Discrimination Act, the advent of social care direct payments and a number of entitlements such as disabled facilities grants for home adaptations and disability living allowance—now PIP—our ability to live independently, for many but not all, became a reality. The package, taken together, enabled greater inclusion in the community as active and not dependent citizens.
Our case for a more integrated and joined-up response to our needs, with the emphasis on self-determination, is what disabled people call independent living. This is about living—living a life, as we all do today. This important principle has been largely accepted but not yet fully realised. In probably the last 12 years, there has been a notable slowdown in progress. Independent living is not just about social care. It is not about living on your own or doing things for yourself. It is about having choice and control over whatever support we need to go about our daily lives—working, socialising, raising our families and so on. It means, as the UN Convention on the Rights of Persons with Disabilities says,
“the equal right … to live in the community, with choices equal to others”.
Independent living aspirations rely on an integrated support framework and the removal of barriers in all aspects of our lives. Remove or reduce one aspect of support, and independent living becomes more expensive, dependent living. It is probably 13 years since the UK adopted the promotion of independent living as an official policy and committed to developing a system of integrated support. However, due to a combination of austerity measures, the closure of the Independent Living Fund, changes to disability living allowance as it migrated to PIP and a lack of progress in the realisation of the UN Convention on the Rights of Persons with Disabilities, progress has ground nearly to a halt in this area and, in some aspects, is regressing rapidly.
What must be done? In thinking about this debate, I asked the noble Lord, Lord Borwick, what he was hoping to hear from our contributions. He encouraged me to think big. So, here I go. If I were Prime Minister tomorrow, I would look to develop radically disabled people’s current ideas of what it would take to be independent, as articulated in the life chances report and in Article 19 of the UN CRPD. A friend of mine suggested an excellent term for such an enterprise: “a comprehensive access to living scheme”. That sums up the kind of integrated, wraparound support required to support living a full life. This would replace our current support provision, which divides disabled people up into unwieldy boxes of social care, continuing healthcare, housing or employment support.
To do this, the Government would, first, develop a national access to living fund, which would bring together all the current state-funded work streams earmarked for our various support needs. Secondly, the Government would reinvest in the regional networks of crucial peer support as currently practised by user-led organisations such as the centres for independent living, and seed-fund new ventures in the form of co-ops, social enterprises, community businesses and other charities. This would enable a hundred flowers to blossom, making for a strong access to living culture, and enabling all disabled people—all, no matter what their medical condition—to maximise their life chances. An access to living investment would foster the transformative social capital we have yet failed to realise under current outdated systems, which, in social care support alone, now offer only the top-down, survival safety-net services.
I therefore invite the Minister to start by meeting the disabled people who have been thinking about this new idea. The national Independent Living Strategy Group, which I chair, is a disabled people-led think tank, set up especially to look at progressing independent living. It is working on this and another very important proposal, which is for an access to living programme of action: namely, to amend current legislation to deliver a new free-standing Bill to achieve this joined-up vision. The Independent Living Strategy Group has already looked at what the incorporation into British law of Article 19 might look like, and we would like to share our thinking with the Government on this.
However, this cannot be done without disabled people. Unfortunately, this Government have not been very good at working with disabled people. I remember the 1990s, when we worked with Ministers and experts in the Civil Service practically weekly; now, you would be lucky to get a meeting once every three months. That has to stop. We need to work together—I mean truly together—because it is high time that disabled people’s right to social inclusion was a reality and not a dream.
My Lords, it is a pleasure to take part in today’s debate and I congratulate my noble friend Lord Borwick on having such a visionary title for it. Few people have done as much as he has on access to transport, not least when it comes to London’s licensed taxis. We should all be incredibly thoughtful on that point when others seek to let new entrants into the taxi market. That same level of access should absolutely be guaranteed before they are given a licence in this city. I must, however, pull up my noble friend on his most pessimistic point. I have no doubt that he will celebrate his 115th birthday. I look forward to celebrating it with him, when I will be a mere child of 97.
There is much I would have liked to cover in today’s debate—education, employment, social inclusion and everything around the fourth industrial revolution, not least artificial intelligence—but I will limit myself mainly to the issue of public appointments. Outside your Lordships’ House, who even knows what a public appointment is? Yet there are more than 6,000 public appointments to 500-plus public bodies responsible for the governance of over £200 billion of public expenditure. For that reason and many more, I was delighted to accept an invitation from my right honourable friend the Minister for Implementation, Oliver Dowden, a year ago, to lead a review into public appointments in the United Kingdom, not least what was happening for disabled people.
There are 6,000-plus public appointments. Currently, 3% are held by disabled people. That is around 180 public appointments. When compared to the overall figure, perhaps we should consider them public disappointments. People fortunate enough to hold public appointments often hold a number of them, which actually means that fewer than 180 disabled people exercise those most important functions in our society. I wanted to look at the reasons that so few disabled people came forward, even fewer were appointed and why we knew so little about the disability status of all people applying for public appointments.
Giving an inclusive and accessible approach to applying for a public appointment is not seeking to give a disabled person an advantage or a leg-up; it is merely enabling disabled people to apply with fairness, dignity and respect. Allowing alternative means to apply for that public appointment is not giving a neurodiverse person an unfair advantage. It may be the difference between them being able and unable to apply for a public appointment at all.
I will share some of the recommendations of my review, not least because my intention in doing the review was that these would be specific to public appointments but would have wider application across all areas of public, private and third-sector life. First, to set a target, 11.3% of all public appointments should be held by disabled people by 2022, with a review held this summer. I do not believe that 11.3% should be a ceiling, but an interim target. It reflects the current target for disabled participation in the senior Civil Service. I ask my noble friend the Minister whether she agrees with that target of 11.3% and what progress is being made towards it. By 2022, I believe we should be well set to go beyond that target.
I wanted the whole review to be focused through the lens of talent, because that is ultimately what we are talking about—the golden thread that runs through all our lives. When it comes to attracting disabled talent, role models are critical. I have already said that less than 3% of public appointees are disabled people. That means that the number of role models is small but incredibly important.
The Government should undertake a serious mentoring programme for all diverse potential applicants for public appointments. They should look at the multipliers, connectors and conduits; at all the channels of the excellent organisations of and for disabled people; and, equally, at organisations across our society. If, for example, the Ministry of Justice was looking to have a disabled person on one of the legal boards, it should look to legal publications, the Law Society, et cetera—to go broad and deep on this. Innovation should be at the heart of everything we do. Why can one apply only with a relatively inaccessible application form and, irony of ironies, a pretty inaccessible monitoring form? We should do stuff differently; if we do not, how can we expect to achieve different results? Why have interviews? Why not have mock boards or shadowing? Think wide, think broad, think innovation. If we want public bodies which truly reflect and represent our fabulous, bright, beautiful and diverse Great Britain, we need to go about this differently.
Ultimately, we are talking about change. Change is not easy, but it is essential. When I was lucky enough to lead Channel 4’s Year of Disability in 2016, not only was I incredibly fortunate to lead a group of people called the Year of Disability advisers—which meant that I was the chairman of YODA—but we were able to put in place many positive impacts both for broader society and for the channel. As noble Lords have mentioned, we need people to identify as disabled people. We were able within seven months though specific, targeted interventions to take the level of our people at Channel 4 self-identifying as disabled from 3% to more than 11.5%. Change is difficult, but it does not need to take a generation.
To take us to the big level—the next 50 years—heading not only towards my noble friend’s big, fabulous birthday party, what do we need to see? Many years before that point, I would hope to see a complete elimination of the attainment gap for disabled people in education. I would want equality of opportunity and representation in all areas of employment and in every aspect of our public life.
As I have already said, it is pretty simple if we take it down to the question of talent. We need government, civil servants, private sector, public sector—all of us—to look harder and further for that talent, not least that held in all the fabulous disabled people up and down the country who, sadly, all too often do not get the opportunities. Ultimately, our business needs to be about this, addressing the fundamental issue that still blights our society. Talent is everywhere; currently, opportunity is not.
My Lords, I, too, thank the noble Lord, Lord Borwick, for tabling this debate—I have to say, he made me smile. Unfortunately, some of the discrimination that I still experience these days is people wafting a hand in my direction and telling me that people like me cannot do lots of things. I hope that I am able to channel the spirit of the much-missed Sir Bert Massie in saying that my response to that is always, “What? You mean Welsh people can’t do those things? Oh, sorry, you mean the disabled?”
I understand that the Minister might not be able to answer all my questions today because my contribution will cover a wide variety of areas, from physical activity to wheelchair provision and public transport, but the issues and solutions for disabled people show that they do not fit into just one government department; we are not just one homogenous group.
I declare an interest in that I am chair of ukactive and of the national Wheelchair Leadership Alliance. As I hope most of my noble friends will be able to attest, having the right wheelchair is crucial to living an independent life. Having the wrong chair or the wrong cushion can be disastrous. A pressure sore alone can cost the National Health Service £150,000 to heal. While I am delighted that in their response to the consultation on their 10-year plan the Government have committed to creating a legal right to a personalised wheelchair budget, there is still much that we need to do. I hope that the Minister will be able to reiterate that commitment. Within this work there is an amazing opportunity to create greater alignment of health and social care support for disabled people through integrated personal budgets and applying the comprehensive model for personalised care. Providing the right chair is a complicated issue of tariffs and access. This is not just about creating significant savings but, if we get it right, radically improving the health and lives of disabled people.
We know that everybody benefits from having more physical activity in their life. The Alzheimer’s Society has recently produced an amazing guide to show what those with Alzheimer’s can do and how they can benefit. Activity Alliance recently published research showing that a significant number of disabled people have concerns about being physically active in case it affects their support and benefits. Everyone Can is a project, commissioned by Sport England in 2017, which aims to encourage more disabled people to be physically active by identifying and addressing a number of specific barriers encountered when using gym and leisure facilities. Slightly worryingly, Sport England’s 2017-18 Active Lives survey found that 42% of disabled people and those with long-term health conditions were inactive. This is double the rate of those without disability or impairment.
We have to turn physical activity into a reality for disabled people, so ukactive has been working alongside disability organisations, such as Activity Alliance, Disability Rights UK and Sense, to identify the common barriers and a range of potential solutions which could be piloted and rolled out in the next two phases. This has included consultation with disabled people, disability experts, advocacy organisations and leisure operators. In phase 2, interventions will be piloted across a select number of sites and will be underpinned by rigorous assessment and evaluation. They will look at a consistent data standard, how we make changes to the physical environment, and staff training and workforce development, encompassing technical and communication skills. We have to create a more joined-up stakeholder community that highlights the importance of physical activity among disabled people and signposts them to appropriate local provision. To combat the fear of being physically active, we have to look at the personal independence payment structure and how assessments are carried out to make sure that people who are being active do not have their benefits removed and that being active is not seen as a negative thing. It can only be positive if disabled people are able to be active.
I turn to public transport. There is still a lot of discrimination if disabled people want to travel by plane. The noble Baroness, Lady Vere, has offered me a meeting. The ball is firmly in my court to take her up on that. I take more than 100 train journeys a year and I was recently asked what I wanted for disabled people. It is really simple: I want the same miserable experience of commuting as everybody else. Sadly, we are not there. Luckily we do not have to travel in the guard’s van any more but—this is slightly tongue in cheek—at least then we had a chance of getting on and off trains. I apologise to anyone who follows me on social media for the amount that I post about trains, but it is to show the challenges that many disabled people face every single day. There was no accessible toilet on the train that I used on Monday to come to London to be in this Chamber. I knew about it before I got on the train, but in this day and age it surely cannot be acceptable for trains to run with no accessible toilets. The booking system needs a lot of work. I have had many positive interactions with Network Rail and the train operating companies. To be fair, they did not realise the size and scale of the issues that we have to deal with, but the Government can also do more.
In recent days, FirstGroup confirmed to a colleague of mine that there will be only two spaces on the new London to Edinburgh service that comes into effect in 2021. The new Caledonian Sleeper has no accessible shower on board. I am looking forward to a time when I book such a journey and push through the station in my pyjamas looking for an accessible shower that may or may not be in the station. I am not sure that anyone is ready for that. The accessible twin rooms on that sleeper do not have any access to the lounge, so disabled passengers will be very isolated in the room that they book. It is not currently possible to book online. What about people who are deaf or have multiple impairments? At the moment, the only way to book is by phone: this is not accessible. I have not yet written to the operators of the Caledonian Sleeper; I will be making contact this week. It has recognised that it has to do more. I found out this morning that GWR’s sleeper service has designated space in a room with wheelchair access but, again, no access to the lounge. It provides room service or at-seat service, but limits the way that a disabled person can move around the carriage.
The new Azuma trains that have come on line with LNER have had a mixed response. I was offered an opportunity to go and look at one. I was not able to take up that particular date, but I shall go and look at it in the next couple of weeks. I heard this morning that the wheelchair seats have no windows and are isolated at the front and back, which does not always provide easy access for people. There are examples of good practice. Abellio is apparently very good at consulting disabled people, but other train operating companies in the network have to continue that good practice.
Finally, I ask Her Majesty’s Government not only to support co-production and consultation with disabled people—it is a travesty that train operating companies are not consulting disabled people on these issues—but to look at the design regulations again to ensure the best outcome for disabled people, so that we can have the same miserable experience as everybody else.
My Lords, I am indebted to my noble friend Lord Borwick for tabling this far-seeing debate. I remind your Lordships of my registered interest as the chairman of the stroke charity ARNI, Action for Rehabilitation from Neurological Injury.
Stroke is the leading cause of disability in the United Kingdom and there are some 1.25 million people living with its effects at any one time. My noble friend mentioned the period 50 years ago when stroke, often then loosely called apoplexy or seizure, was a death sentence; today things are, of course, very different. There are about 130,000 new stroke victims each year in the UK, and the vast majority leave hospital having survived. The reasons for this are the extraordinary advances in acute clinical care during the last decades. There is also far greater public awareness of stroke, of its immediate symptoms and of the absolute necessity of seeking urgent help from the emergency services. I pay tribute to the Stroke Association and other stroke charities for their very successful dissemination of this vital information.
If you have a stroke, you should be rushed off to hospital and treated with a thrombolytic—a clot-busting drug—within four hours. You then stand an excellent chance of survival. However, it is on discharge from hospital that, for many people, their future disabilities really strike home; disabilities which will require lifelong support for a great proportion. For instance, 70% of them will have upper limb problems that render a hand useless and many will suffer weakness and lack of control of a leg, which makes walking extremely difficult. If they are of working age, too often employment becomes impossible. The annual cost of stroke in the UK is estimated at £26 billion. The stark reality is that families and carers pay for three-quarters of long-term care themselves. The current evidence suggests that the average annual cost of a stroke can be as much as £22,000 per family.
Alarmingly, the incidence of first-time strokes in people aged over 45 is expected to increase by 60% over the next quarter century. Many of these people hope to return to work. They are, in fact, three times more likely to be unemployed than if they were not disabled by stroke. Following discharge from hospital, patients may receive some, largely passive, physiotherapy and, if necessary, speech therapy, but this is quite strictly time limited, measured in weeks rather than in years—and then, to quote Andrew Marr, whose own stroke brought him considerable disability, you fall “off a cliff”.
Most stroke survivors, therefore, are stuck in perpetuity with their impairments and incapacities and a much-reduced lifestyle; the consequent effects for them and their families and carers are huge and debilitating. What can be done in future years to improve their rehabilitation? We most seriously need more research on rehabilitation. At the moment, stroke research is allocated about £56 million each year, compared to, for example, £554 million for cancer. Most, quite rightly, has gone on clinical research on the acute stage, on primary care, the causes of stroke and its prevention; far too small a proportion has gone on rehabilitation.
One hopeful area is to take advantage of neuroplasticity, the ability of the brain to reorganise itself by forming new neural connections to compensate for injury. However, this reorganisation does not just happen; it seems to require constant repetitive active exercise to make neural connections stronger and to drive functional changes. To give an example, last year I met a stroke survivor aged 38 who had lost all ability to grip a glass or mug. She was trained by my charity constantly to attempt this, day after day, in a special routine. At first the movements were almost imperceptible, but she persevered. Eight months afterwards she could demonstrate to me an extraordinary improvement: she could lift the mug to her mouth and drink. Each day of determined repetitive exercise had made her neural connections stronger until her hands operated again.
Another patient, a young man aged 17, was devastated to be paralysed by a stroke, probably caused by a sports-related injury. Absolutely determined to improve his ability to walk, he devoted himself for a year to a series of specially tailored repetitive exercises, performing them day after day and gradually making tiny improvements. He was, at the end of this period, able to kick a ball and catch it. I have seen very many other examples of success: they require dedication and patience. My charity trains and qualifies specialist rehabilitation instructors. They visit patients in their homes to help them with repetitive exercise routines, to do action control work for upper limbs, to do strength training and to teach crucial physical coping strategies for those with loss of control on one side of the body, such as getting down on and getting off the floor without support. In short, this is targeted therapy aimed at finding what improves individual stroke survivors.
At the moment, stroke rehabilitation of this kind is carried out by only a few charities; it has been subject, however, to some excellent pilot studies. We badly need a national programme of such treatments, publicly funded and assisted by ongoing research into outcomes. Given our ever-ageing population, we need these in the next five years, not in the next 50. Given this serious gap in provision, I hope my noble friend the Minister will be able to give me some hope and reassurance that there will be a change in attitude and direction concerning rehabilitation after stroke.
My Lords, I am delighted to follow the noble Lord, Lord Lingfield, who demonstrates how many types of disability we have to consider. I thank the noble Lord, Lord Borwick, for setting us the very good challenge of imagining where we would like to be in the field of disabilities in 50 years’ time, and even enticing us with the prospect that we might all be here in 50 years’ time to take part in this debate again and to take stock—indeed, that we might have a Green paper or even a White Paper to consider for that debate.
I want to say one thing in particular. There are noble Peers in this House, many of whom have taken part in this debate, who suffer from very notable disabilities and we owe them an enormous debt of gratitude for the service they give here, the courage they show and the leadership they give to all those outside this House who suffer from these varying disabilities. For my part, I declare an interest as someone who for 50 years has suffered from chronic pain linked to musculoskeletal problems. As I will say in a moment, there are many millions of people who suffer from this. I just want to put down two considerations in this debate for this category of people. First, we need to implement a national chronic pain management service which is well co-ordinated and effective: we have a long way to go. Secondly, in the field of work and health, we need to ensure that people who suffer from chronic pain and other disabilities in their jobs retain those jobs or, if they have lost them, are helped to get back to work.
I shall give some facts. First, some very cautious figures. There are at least 8 million people who suffer from chronic pain, many with musculoskeletal links, of which 4 million suffer from severe chronic pain that hinders their activities quite seriously. Of course, it is true that those who are over 65 suffer more pain, but let us take people in their jobs. Some 25% of those who do jobs and suffer from chronic pain lose their jobs—that is a critical figure. Moreover, in five out of 10 global diseases, pain is a major component. So pain is common, expensive, disabling and distressing. People want to see a reduction in their pain and an improvement in their quality of life. I have worked with other specialist pain organisations in the last 10 years to campaign for this.
The first thing we need to recognise is that there are core quality standards for dealing with pain management services. NICE has set out certain standards on back pain, for example, and how to deal with it. Pathways have been established. There is evidence of best practice—Sheffield, Gloucestershire and Scotland, for example. What is missing is the effective, well co-ordinated implementation of these guidelines. Across the country, it is still very much a lottery, with particularly poor services in areas with people who have very low levels of income, who suffer badly. These pathways should indicate, in my view, a kind of pyramid of pain services, because at least 50% of patients can be dealt with through primary care. GPs have been described to me very well as acting as a sophisticated sieve to do the initial assessment, but the more serious cases enter the region of multidisciplinary support, which is what they need. That needs to be tailor-made to their particular setting and their own problem.
The key to this is to learn self-management, but you then have to draw on the multiplicity, the battery, of different specialisms. There is medication, of course. I will not get into opioids now, but I have weaned myself off opioids after 10 years and I think that that is quite a good thing to do. Physiotherapy is critical and there is osteopathy and acupuncture, of course. Psychologists can be vital, because there is not yet a recognition of the mental health aspects of suffering from pain. I will come in a minute to the role of occupational therapists, who play a vital role in getting people back to work. Learning self-management is like conducting an orchestra: you need to know what instruments to draw on—what medical specialisms to draw on—in conducting that orchestra in order to strengthen one’s own health and reduce pain. Providing a national service is the first priority.
The second priority is health at work. Over the last 10 years Dame Carol Black has produced two remarkable reports on how to make it easier for people who suffer to stay in their jobs, or come back to their jobs if they have lost them. In that period, one thing that has been achieved is that it is now accepted that work is good for the health of people who suffer from a disability. Indeed, I was a great friend of Mrs Pearsall, who invented A to Z maps, who suffered from intense pain for 50 years. I asked her the secret—“How do you deal with it?” She said, “Divert the pain’s attention”. I replied, “That’s easy during the day—you just work hard. What about the night, when you can’t sleep?” She said, “My dear, it’s very easy. You just read the Bible all night”. I have not quite got to that stage, although I am trying hard.
Many at work suffer and, as I have already said, many lose their jobs because they suffer from chronic pain and related problems. Those who have pain are a big cost to the economy: £12 billion a year. The challenge for the Government is to improve employment for adults. They have set a very good target of getting another 1 million disabled people into work by 2027, but to achieve that, you need to ensure that you have an effective scheme. What has been known as the Fit for Work scheme is not working. Here, we have to recognise that it is not so much about the large employers who provide some occupational assistance but the small businesses. Above all, I emphasise occupational therapy, which I would like to ask the Minister about. There is a vital role to be played by occupational therapists in helping people to assess what is needed to enable them to stay at work, to ensure that the employers have a flexible system. What progress is being made with the Wellcome expert working group that has been set up to study occupational health and to see what improvements can be made?
I welcome the progress that has been made but there is a long way to go if we want to keep people in jobs, improve their quality of life and indeed improve productivity for this country. That is what we should aim for in 50 years’ time.
My Lords, it is a pleasure to follow the noble Lord, Lord Luce; pain is such an important issue. I thank the noble Lord, Lord Borwick, for securing this debate on issues facing people with disabilities. Disability can be complicated and varied, as has been illustrated by this debate today. Disability is covered by many different government departments, so it may be difficult for the Minister in today’s debate to answer all your Lordships’ questions; perhaps she may be able to write to us.
I take this opportunity to say a few words about the Spinal Injuries Association. I declare an interest because, about 40 years ago, I started it and am its president. Most of our members have experienced traumatic injuries and life-changing experiences. Our members, who are often paralysed from the neck or back down, do not have feeling in that region. The three Bs are affected: bladders, bowels and bed-sores. There is a need for more advanced technology, such as superior wheelchairs, turning beds to help prevent bed-sores, suitable houses—with all the new houses being built, I wonder how many are suitable for people using wheelchairs—and all sorts of communication devices, the number of which increases all the time. I am sure that, in the next 50 years, there will be some wonderful developments. However, I was disappointed when the Government did not back the disabled access Bill of the noble Lord, Lord Blencathra, two years ago. It aimed to improve access; many people use electric wheelchairs and, without a ramp, it is impossible to get the wheelchair up a 4-inch step. These ramps are not expensive, but many people do not know about them.
All spinal cord injury people should and must have access to specialist spinal health services, and the NHS must commit to funding the additional capacity it identified in its own service review of spinal cord injury services. There must be a joined-up approach between health and social care, with each ensuring that disabled people are given the means to live independently, contribute to society and make the most of their lives. There must be independent monitoring and scrutiny of NHS continuing healthcare to ensure that the most vulnerable in society are enabled to live independently. The Government should explain how they intend to make £855 million-worth of savings from this national continuing healthcare by 2020-21. We cannot see how it can be done.
On Tuesday, I attended in the Cholmondeley Room the launch of myelopathy.org. It is dedicated to improving patient outcomes in cervical myelopathy—an under-recognised, progressive, painful and disabling condition—through scientific and clinical research, education, and collaboration with patients and the wider myelopathy community. The team is excellent, led by a charming Austrian doctor and with volunteers, some of whom are enthusiastic medical students. The team is based at Addenbrooke’s Hospital, Cambridge. This gave great encouragement to many people who were there. I feel that we should all support each other, as our needs are often very similar.
Antimicrobial resistance—AMR—is an escalating global threat that puts millions of lives across the world in danger. We cannot rely on the development of new antibiotics alone to mitigate this threat. We need better preventive measures, as well as alternative treatments, including innovative ways to use the body’s own immune system and healthy bacteria. There is a new white powder called micropore particle technology, which is a treatment for wounds—Acapsil is the trade name. When placed on the wound’s surface, the particles use microcapillary and evaporative forces to remove moisture from the wound’s surface, removing the toxins and enzymes excreted by the microorganisms. This support of the immune system enables the immune cells to selectively remove the unwanted microorganisms, while preserving the wanted micropopulation, removing the infection and, it is hoped, closing the wound. It functions as a passive immunotherapy. The Spinal Injuries Association is very interested in this and hopes that it will be accepted on to the NHS list. It could well save millions of pounds, as pressure ulcers cost billions of pounds a year across the world. Perhaps in the next 50 years there will be all sorts of interesting treatments.
Last week, the noble Lord, Lord Lansley, had a debate on antimicrobial resistance. The noble Lord, the noble Baroness, Lady Thornton, and I spoke of Achaogen. This start-up company in America is developing a therapy that was given FDA approval in July 2018 for the use of plazomicin in complex urinary tract infections. Sadly, the company filed for bankruptcy in April. The problem is that this new, much-needed drug was approved for use but there is no revenue to support it. Novel antibiotics such as this one get a relatively narrow indication for use, because the antibiotic is not broad-spectrum. It was targeted at the infection, which is what is needed because of drug resistance, but the sale is limited. Many spinally injured people get urinary infections, and resistance is growing to the present drugs for that problem. The noble Baroness, Lady Thornton, asked a question that I now ask again—I hope that we will get an answer. What will happen to this drug? It can treat the most serious superbugs. Will it be bought and developed by another company? It is needed. Urinary tract infections are very serious if untreated.
My Lords, I too applaud the noble Lord, Lord Borwick, for initiating this helpful debate. If we want to improve outcomes in the disability field in the next 50 years, surely the best way of doing so, where we possibly can, is to prevent disability occurring in the first place. I therefore take this opportunity to speak about the potential to prevent some disabilities—obviously a limited number, but some—and to ameliorate many others, if only the UK could agree to establish a special category for medical cannabis within our regulatory framework. This sounds a narrow subject, but actually it has huge implications for many people.
First, why should cannabis be treated differently from other medications? One important reason is cost. Sativex, one of the only medications so far approved by the MHRA, went through so many expensive random control trials that NICE would not approve it on grounds of cost. The result is that severely disabled MS patients tell me that they still go to the illegal market to obtain cannabis to alleviate their symptoms. They say that the risk of arrest is worth it to feel better and have less suffering. I find that abominable, but that is what our system is causing.
I fear that a similar fate awaits Epidiolex. GW Pharma tells me that it has spent hundreds of millions of pounds on random control trials. I do not blame the companies—that is what they have to do. But NICE will surely rule that Epidiolex is too expensive to be prescribed on the NHS. The evidence from other countries, meanwhile, shows that cannabis medicines can be extraordinarily effective—much more effective than we recognise in this country—but their research is often based on outcome measures, rather than the very expensive, pukka random control trials. Of course I support random control trials and understand their point, but we have to make sense of our system for the benefit of patients. Ultimately, that is the only thing that really matters.
Epidiolex is coming on to the market, but it is already a suboptimal medicine: it is out of date before it even reaches patients. Israel has identified specific cannabinoids that are extraordinarily beneficial for treatment-resistant epileptic children, but in this country these children will, if they are lucky, be prescribed Epidiolex, if their parents can afford it. Epidiolex will perhaps help them to some extent for a short period, but that is just wrong when similar children in other countries have medication that stops their seizures. Why is this so important? We know that seizures cause brain damage and disability. Every week that we delay recognising cannabis as a medicine for treatment-resistant epileptic children, children are becoming disabled. Fifty years on, they will be suffering disability that they did not have to suffer. That is the point.
I implore the Minister to see what she can do in the department to hasten, ideally, recognition of a special category for cannabis—if only for a temporary period of five years, initially—so that these children can get hold of the medicine they so urgently need. In Germany, cannabis medicines are recognised for more than 50 conditions. Many of them will involve disability and could be alleviated. Can we not follow something similar to the German example? Across the US, Canada and much of Europe, the extraordinary medicinal value of cannabis for some people—I am not saying that it would help everybody—is recognised far more than it is here.
Another important field is pain; chronic neuropathic pain in particular. I applaud the contribution of my noble friend Lord Luce. Chronic pain is such an important issue, given the enormous number of people who suffer every day. As it happens, cannabis medicines are far less dangerous, far less addictive and have far fewer side-effects than opioid medications, which are prescribed every day to people with severe chronic pain. What is wrong with us? What is going on here? We are doing something really bad, and I fear that it has something to do with our regulatory system and the costs involved for certain medications.
I briefly mention mental health. One does not think of cannabis in relation to mental health. I spent years in the mental health services, and I used to ask patients why they took cannabis, given that it interfered with their treatment. They used to say, “Because it makes me feel human. It makes me feel alive”. I thought that that was very interesting, and that was years before I had any interest in any of these drugs. Research evidence is emerging—it is not there yet—that cannabis may alleviate some of their positive symptoms as well. If patients with severe psychotic disorders could manage with cannabis and none of the antipsychotic medications that cause such severe side-effects, it would be completely wonderful. We just have to watch this space. As someone interested in mental health, I am watching rather carefully.
Research evidence is emerging about the benefits of cannabis medicines for these and many other indications: Parkinson’s, Crohn’s disease, brain tumour, PTSD and many more. Many of those conditions cause disability. We can prevent some disabilities—most particularly, I would argue, epilepsy and brain damage—and certainly ameliorate a huge number of others, but only if we put our prejudices behind us and change our regulatory rules.
My Lords, I thank the noble Lord, Lord Borwick, for tabling the debate, his challenging speech and the invitation to the birthday party. The debate has been rich in not only its breadth but its depth. Last time we debated this topic, I spoke about the British film “The Silent Child”, which highlighted the difficulties facing many deaf children and their parents. The film was powerful in part because it placed the viewer in the position of a child who could not hear. A person-centred approach to disability is paramount to progress in disability rights. Over the next 50 years, we must work to ensure that people with all kinds of disabilities are included in policy spaces and that their diverse concerns and experiences are considered and acted on.
I was recently in contact with a young man, desperate to live independently, who, through his experience as an individual with physical disabilities, has developed an expert knowledge of gaps in the personal assistance system that supports his independent living. As a younger person, the sky should be the limit, but only when he can recruit suitable individuals trained to assist him with his day-to-day tasks. Crucially, he pointed out to me that for an active person such as him, the ideal assistant should be trained to do everything from heavy lifting and basic care to aiding him with administrative tasks and assisting him with his studies at university. Such a person is difficult to find when personal assistants are underpaid and their professional development training is neglected. Different funding streams from different parts of the public sector are often still not enough to pay a personal assistant a proper wage. He made a strong argument for reform, noting that disabled individuals wanting to live an independent life is the new “reality”. I would be grateful if the Minister could suggest a way forward for him and others in his position. I declare my interest as chair of the board of trustees for Hft, a national charity that supports adults with a learning disability.
There have been huge improvements in care for people with disabilities in the past 50 years; I expect that our imaginations cannot begin to determine what care might be like in 2070, in 50 years’ time. Every one of us wants to feel valued and loved, to have a home to share, employment, friends and to be cared for. This is the same whether you have no disability or a physical or learning disability. Debates on adult social care in this place tend to revolve around the need to support older people; that is important but I welcome this debate on disability, which is often forgotten. If you ask someone about their mental picture of a disabled person, it is usually someone in a wheelchair or with other aids or adaptations. Across the UK, organisations work tirelessly to provide those basic wants for adults.
I will focus the rest of my contribution on learning disability and the financial problems in delivering care. The estimated 905,000 adults with learning disabilities in England represent a growing cohort of adults needing social care support. For the most part, they look like any of us—able-bodied people. According to the County Councils Network, adults with learning disabilities can account for up to 35% of the total budget for adult social care spending for local authorities in England. Adults with learning disabilities also represent the fastest-growing sector in adult social care. In 2005, only six of the 151 local authorities in England spent more on care for working-age adults than they did on care for the elderly; in 2017, 57 did so, so the switch during those 12 years has been considerable. Adults with learning disabilities are living longer lives. While this is to be welcomed, we should also be aware that the support these individuals will need will become more complex if they develop secondary support needs; for example, adults with Down’s syndrome are more likely to develop dementia earlier in life than their non-disabled brothers or sisters.
Unlike care for older people, support for adults with learning disabilities is funded solely by local authorities, with no self-funders. Figures published by NHS Digital show that between 2014-15 and 2017-18, the number of adults with learning disabilities requesting social care support more than doubled, but 66% of people ended up getting no support and only 19% ended up with long-term support. Local authorities have considerable power over providers. They are the only purchasers of services in any given area so are, in effect, a monopsony. With few providers having reach beyond one or two local authorities—and with exit barriers relatively high and entry barriers relatively low—most providers are beholden to individual local authorities for all their funding.
However, noble Lords will be aware that local authorities have borne the brunt of the Government’s austerity programme, with funding from central government rapidly decreasing. This has placed a downward pressure on the rate at which they are able to commission social care packages. Providers are becoming overrisked and underrewarded. Contracts are typically commissioned annually on the basis of the number of support hours an individual needs. The more independent a person is deemed to be, the fewer the support hours commissioned for them. This creates perverse economic incentives, as providers which are able to invest in improving the quality of care they deliver face being penalised by having the number of hours reduced. This could have potentially damaging consequences for both the financial sustainability of the provider and the support of the individual in receipt of care. My charity’s recent report, Sector Pulse Check, stated:
“More than half (59%) of providers have begun to hand back contracts to local authorities as a way of responding to funding pressures, compared to 25% in 2017. Looking forward, 68% said that they envisage having to hand back contracts ‘in the near future’ if their financial situation does not improve”.
Learning disability cannot be treated. There are few aids, adaptations or devices to help the individual and the carer. However, I am optimistic about changes in the digital sphere. I hope that digital technology will soon be able to detect changes in behaviour to indicate when someone will have an epileptic fit, and that virtual reality will be used to teach skills such as cooking and road safety without danger. The technology is there, but it requires the big digital innovators to work with interested university departments to see this as a good social project and invest. I hope that they are listening.
In his recent appearance before the Lords Economic Affairs Committee, Health Secretary Matt Hancock said that he saw a “series of injustices” in the system but was,
“more attracted to options that build and directly improve on the system than ripping up the whole thing and starting from scratch”.
Looking ahead to the next 50 years, Governments should look to a more outcome-focused way of delivering social care for adults with a disability. By incentivising providers to invest in the future of their services, and rewarding them for delivering improved outcomes, we should begin to see the creation of a social care system that delivers high-quality support for adults with disabilities in a way that lowers local authority spending and does not threaten the financial stability of providers.
On a final note, I hope that the newly appointed Minister, Justin Tomlinson, takes note of this debate and, more importantly, takes action.
My Lords, I congratulate the noble Lord, Lord Borwick, on initiating this fascinating, well-informed debate. I declare an interest as a member of a clinical commissioning group.
I appreciate that the debate is fundamentally optimistic about the future for people with disabilities. It celebrates the progress made and expresses the hope that science, medicine, technology and societal enlightenment hold for curing, preventing and alleviating many conditions, as well as creating the living conditions we would want for ourselves and all members of society. Every day we hear about life-saving, gene-altering drugs and treatments, which are exciting and bring hope to many people and their families. Indeed, the planning, environmental and other changes that seem likely in the next 50 years were eloquently mentioned by the noble Lord, Lord Borwick.
In these remarks, I of course want to speak about the future and the hope that it holds for disabilities of all kinds. However, we need to start by being truthful about the situation currently facing millions of our fellow citizens with disabilities in this, the fifth-largest economy in the world and a rich first-world country. We must do so for two reasons. First, it is important to hold this Government to account for the poverty and reduced life chances that their policies over many years have visited on the disabled. Secondly, what will the Government do to ensure that disabled people are treated with equality and have equal access to the advances in medicine and technology we have spoken about?
There are 13.9 million disabled people in the UK. Some 8% of all children are disabled, as are 19% of working-age adults and 45% of pension-age adults. In 2018 the Social Metrics Commission published a report which found that disabled people are much more likely to be living in poverty than the population as a whole. Nearly half of the 14.2 million people in poverty are living in families with a disabled person—6.9 million people, equal to 48% of those in poverty. The SMC report recognises the inescapable costs of disability, accounting for them alongside the value of disability benefits to reflect a lived experience of people with a disability.
The facts of life of living with a disability in the UK are stark and, in my view, shameful. It is almost a perfect storm of failed public policy, which is to put it much less tactfully than did the noble Baroness, Lady Campbell, who called it an adverse reversal of progress. Since 2010, £7 billion has been taken out of adult social care budgets as a result of reduced funding. Some 80% of local authorities say that there is not enough provision of social care services and we have a social care system in crisis. We know that the NHS faces huge challenges in terms of staffing because that has been headline news over the past few days. We have immediate shortages of GPs and nurses, with a knock-on effect for those who require continuing support and healthcare. We have not had a social care Green Paper for more than two years, as many noble Lords have said. The Institute for Government has said:
“The green paper has become an object of ridicule, but the Government’s constant foot-dragging is no laughing matter … Delays to the green paper make it impossible for councils to plan ahead”.
What is to be done? The Labour Party’s policy is a social model of disability; while people may have a condition or an impairment, they are disabled by society. Rather than adopting such a model and, through the way they have handled support for disabled people, the Government have not significantly challenged the stigmatisation that often goes with a disability. Some 40% of our disabled fellow citizens do not feel involved in or valued by our society. Indeed, my noble friend Lord Faulkner eloquently described some of the abuse suffered by disabled people.
According to the OBR’s January 2018 report, almost 1 million disabled people will be made thousands of pounds worse off as a result of universal credit, and the basic disabled child addition in universal credit is worth less than half of the equivalent in child tax credit. This could affect around 100,000 disabled children, who may receive up to £32 a week less than they would under child tax credit. It is therefore not surprising that a piece of research by the think tank Demos says that the Department for Work and Pensions should be stripped of its responsibility for providing social security benefits and job support to ill and disabled people, because of a series of botched reforms to disability benefits and the imposition of a brutal sanctions regime that has left many vulnerable claimants stressed and in poverty. The call comes amid concern over what critics say is the DWP’s punitive and insensitive benefits policy and contemptuous treatment of some claimants. Last year, the chair of the charity Scope, the former top civil servant Andrew McDonald, who receives PIP because he has Parkinson’s and terminal cancer, called the disability benefits system a “hostile environment”. The United Nations report on extreme poverty described this Government’s cuts as “callous”, “punitive” and “mean-spirited”. The Equality and Human Rights Commission has said that one in five disabled people suffers an erosion of their rights because they are disabled and, despite government pledges to improve conditions for the nearly 14 million disabled Britons, their situation is getting worse. They find it more and more difficult to live independently, to be included and to participate in their communities on an equal basis.
I agree completely with the aspirations rightly mentioned by the noble Lord, Lord Holmes, and indeed those described by many noble Lords, but we are not there yet. I therefore encourage the Government to hold a mirror up to the issues facing disabled people in the UK and make that their starting point for reform. As noble Lords have said, the Government must talk to disabled people about what they think and need for the future. There is no doubt about the huge change in society’s attitude towards disabled people, which is precious and needs to be built on.
I am going to dwell on science and technology in medicine. It is wonderful that our world-class, cutting-edge science research has for example produced a drug like Orkambi, which targets the underlying causes of cystic fibrosis. It targets a mutation that around 50% of people with CF have. It is licensed for use in the UK, but NICE has not recommended it for use in the NHS. It is available only rarely on compassionate grounds. There are drugs coming down the pipeline that could cover 90% of the CF community, and we have to find a way to ensure that these life-changing treatments are available to everyone who suffers from such conditions. The report of the Health and Social Care Select Committee is now out and makes that recommendation. I should like to know what the Government’s response is going to be. Muscular Dystrophy UK is running a campaign known as FastTrack to identify and remove any barriers to accessing life-changing treatments. The charity says that this is an “encouraging time”, with many clinical trials in development and treatments emerging. However, existing drugs have been subject to lengthy assessment processes which cost individuals time that cannot be recovered. That is because, once lost, muscle mass and strength cannot be regained. The noble Lord, Lord Lingfield, also talked very adequately about the issues around stroke.
An increasing number of drugs and treatments are becoming available to treat a whole range of conditions mentioned in the debate. The problem we face is that it takes too long for them to reach the people who need them, and the deals being made are not helping. In the past two days we have read the amazing story of a young woman who has received the very first treatment for cystic fibrosis. She had a lung transplant that went well, but then developed infections which could not be treated because they were impervious to the antibiotics available in the hospital. The University of Pittsburgh has been enlisting students to collate the world’s largest collection of bacteriophages, which are viruses that prey solely on bacteria. Three have been identified so far which have been used to treat this young woman for the past six months. She will recover.
This is an important story on any levels. The first is how to replicate this science to get it into common use. The second is how to make it available at the point of need, because I suspect that it is expensive. Finally, it feeds into the antimicrobial challenges that we face in our NHS here and among health services across the world. This is something that the Government need to address. NICE needs to increase its capacity and not have its funding cut as it has been, so that it is forced to charge for its appraisals—a false economy if ever I saw one. NHS England needs to up its game by holding earlier pricing discussions with pharma, reaching flexible treatment access arrangements, meeting additional costs for early access schemes and urgently reviewing individual funding requests. The noble Baroness, Lady Meacher, made a very good point about unacceptable delays. The noble Baroness, Lady Campbell, rightly mentioned the importance of the pioneering work of your Lordships’ House, and I am proud to have been on the receiving end of much of her determination in this matter. Does the Minister agree that we are in a fast-moving world, so the Government have to respond appropriately?
My Lords, it is a privilege to respond to this important debate, and I join with other noble Lords in congratulating my noble friend Lord Borwick on having secured it. I also join him in congratulating the Habinteg Housing Association on its work over the past 50 years. The issues raised by noble Lords on all Benches have highlighted some of the challenges and opportunities not just for the Government but also for businesses, civil society organisations, our communities and our families. In my remarks I will focus on the role of government in responding to the challenges and opportunities—
“the important rather than the urgent”, as my noble friend put it—presented by the changing face of disability in the coming half-century. This is in no way to diminish the vital role of families, carers and civil society organisations. Indeed, government has important judgments to make about how to help them flourish, but also about knowing when to get out of the way.
The past 50 years have seen huge changes in the way disabled people are cared for, supported and regarded by society. Gone are the asylums that kept disabled people hidden from society. Instead, important legislation—which a number of noble Lords have been part of—including the Disability Discrimination Act and the Equality Act, has been passed, creating a platform from which the rights of disabled people can be upheld. In every field of public life, from politics to sport and from academia to the arts, there are powerful and inspirational role models, as raised by the noble Baroness, Lady Thomas, and my noble friend Lord Holmes. They are role models for those with or without a disability—including, of course, in your Lordships’ House. We can contrast this with a time when Roosevelt was President in the US and the Secret Service was reported to have seized and smashed the cameras of journalists who tried to take photographs of him in his wheelchair.
As we have heard from all noble Lords this afternoon, much still needs to be done to ensure real equality for people with disabilities, to remove stigma and discrimination and to offer proper care and protection from threats such as hate crime and the risks of loneliness and isolation. Successful management of such huge changes, the types that noble Lords have debated, requires a clarity of vision. So what are we aiming for? My noble friend Lord Holmes talked about fairness, dignity and respect, not just in relation to appointments in public life but with much wider applicability. I also liked the words of Alex Fox of Shared Lives in his book, A New Health and Care System, in which he wrote that we should be achieving and maintaining well-being for people with disabilities.
Well-being is a core principle underpinning much of the legislation in this area, and government has a role to play in helping to align funding, assets, incentives and regulation to make this happen. We need not just to encourage the provision of services but to foster the relationships that are so crucial for genuine well-being, of which we have heard much today. Organisations such as L’Arche for people with learning disabilities—whose remarkable founder Jean Vanier died this week—have been prophetic over 50 years in emphasising the importance of recognising the gifts that those with a disability offer us all. That must underpin the kind of culture change that the noble Lords, Lord Addington and Lord Faulkner, talked about.
A number of noble Lords, including the noble Baronesses, Lady Thornton and Lady Thomas, highlighted that despite the progress of the last 50 years, all key indicators still show multiple disadvantages for disabled people—from poverty to educational outcomes, employment, discrimination, isolation and a lack of opportunity. This Government are committed to addressing this across a range of key policy areas including, to name but three, employment, healthcare and transport. I assure the noble Lord, Lord Faulkner, that I will read and share the report from his Select Committee on this.
As my noble friend Lord Borwick described, the shape of disability is projected to change significantly in the next five decades, with a sharp increase in the number of people over 65 to around 21 million and a tripling of those over 80 to 9.5 million. It will be quite a birthday party when it comes. Conversely, important medical advances should presage declines in the prevalence and impact of many cancers and other life-limiting diseases. We have the potential to move from what has been described as a national sick-care service to a national preventive healthcare service.
Regarding prevention, government also has a role to play in understanding and acting on some of the wider factors that can lead to disability, which I think the noble Baroness, Lady Thornton, hinted at in her speech. Research that has shown the impact of adverse childhood experiences on the brain—and on later-life outcomes, not just mental ill health but also physical conditions such as cardiovascular disease and diabetes—needs to inform the response we offer to children growing up today with domestic abuse, parental substance use or parental mental health problems, as well as those living in poverty or with a parent in prison. This understanding underpins the so-called public health response to serious youth violence adopted in Glasgow and London and now being consulted on nationally. The potential for neuroscience to explain some of our health challenges is genuinely exciting, as my noble friends Lord Borwick and Lord Lingfield argued.
Perhaps better understood are the links between diet and exercise and cardiovascular health, diabetes and dementia, where our colleagues in public health services play such a crucial role. For example, we recently announced an ambitious plan to halve childhood obesity by 2030. We also believe in the importance of risk reduction; around one in three dementias are considered preventable. Perhaps the most important task—many noble Lords have raised it today—for government in a rapidly changing world of disability is to keep listening to those with lived experience, their families and their carers. This is not something that Governments of any hue find easy, but that does not make it any less important. Understanding the perspective of people with lived experience is essential for government’s response to address their needs, as well as recognising and celebrating their gifts and talents.
So what do disabled people say are their key concerns? They talk about their health, of course, but also about financial insecurity, weak social connections and a fear of losing their independence. These issues have been raised by many noble Lords today. The noble Baronesses, Lady Campbell and Lady Thornton, raised the importance of user groups; they are vital in this area. For example, patient groups—especially those that are networked—can make a crucial contribution to government policy. There are over 500 groups of stroke survivors co-ordinated by the Stroke Association, over 400 for diabetes and almost 1,000 groups of cancer survivors co-ordinated by Macmillan. These networks offer people with disabilities information they can trust and, crucially, put them in positions of authority, which in turn can be combined with specialist medical input if needed.
I say to the noble Baroness, Lady Campbell, that I would be absolutely delighted to meet the national Independent Living Strategy Group. I am not sure whether the question from the noble Baroness, Lady Jolly—about the young man she talked so eloquently about—is about where he starts or where we start, but we should start by listening.
While noble Lords developed a green thread around the Green Paper, they were perhaps kinder on funding—but funding is obviously a crucial area where government plays an absolutely vital role. This is not just about enough funding, which many noble Lords raised, but about how to use our funding in a way that drives the outcomes that people want and that actively rewards success. I noted my noble friend Lady Browning’s suggestion regarding incentives in the tax system.
My noble friend Lady Browning raised the challenges from the Alzheimer’s Society report that was recently published. She will be aware that the Government published the Dementia 2020 Challenge in 2015, which aims to make England the world leader in dementia care, including in the area of training as well as research and awareness of dementia, and will respond to the Alzheimer’s Society report.
My noble friend Lord Lingfield raised issues around funding for stroke patients. He will be aware that the NHS long-term plan identifies stroke as a clinical priority.
More broadly, noble Lords welcomed the introduction of personal health budgets. I thank in particular the noble Baroness, Lady Grey-Thompson, for her remarks in this regard. The NHS long-term plan set out a commitment for 2.5 million people to benefit from personalised care by 2023. The growing demand for care, which the noble Baroness, Lady Jolly, raised, means that we need to reach a longer-term sustainable settlement for social care. Sadly, I do not have a magic wand at the Dispatch Box, so I cannot give a date for the publication of the Green Paper, other than to say that it will be at the earliest opportunity. But it will aim to address the issues of both sustainability and providing a genuinely human response. Through integrating health and care services, the intention is to establish the right organisational and financial incentives for providers to collaborate in order to deliver preventive, proactive and co-ordinated care for local populations, and, crucially, care that feels human.
A number of noble Lords raised issues around developments in technology. Clearly, a crucial role for the Government is to consider how to encourage innovation and research, manage intellectual property rights for the greater good and share best practice. The noble Baronesses, Lady Meacher and Lady Masham, raised specific questions on that and I will write in response, if I may. The noble Baroness, Lady Masham, also raised very practical challenges around the three Bs, which are obviously important, albeit possibly less glamorous than some of the other areas of innovation.
The noble Lord, Lord Luce, raised the important issue of chronic pain. As he said himself, many patients with chronic pain can be successfully supported and managed through routine primary and secondary care pain management systems. The noble Lord mentioned the existing standards, but the National Institute for Health and Care Excellence is also in the process of developing new clinical guidelines for chronic pain, which are due for publication in August 2020. He also raised the crucial issue of supporting employers.
Issues around employment were raised by a number of noble Lords, including my noble friend Lord Holmes and the noble Lord, Lord Addington. The Government have a key part to play in addressing the financial insecurity that all too often accompanies life for disabled people. This includes creating opportunities for disabled people to gain employment and to stay in employment, as set out in our 2017 plan, Improving Lives: the Future of Work, Health and Disability, which aims to increase the number of disabled people in the workforce by 1 million in the next 10 years. As noble Lords acknowledged, overall employment has been rising, and our goal depends on disabled people fully sharing in this success.
I thank my noble friend Lord Holmes for his work on encouraging diversity in public appointments. The Government are confident that it will help us understand the issues in this area and will respond to his recommendations later this year.
The noble Lord, Lord Luce, raised issues about encouraging employers to play their part in supporting employees who are struggling with their health. Later this year, the Department for Work and Pensions and the DHSC Work and Health Unit plan to consult on measures to encourage employers to play a crucial part. Noble Lords will have noticed the announcement this week from Centrica about giving its employees with caring responsibilities extra days off.
The Government also need to play a supportive role in enabling employers and civil society organisations to strengthen social connections for the disabled. Increasingly, older people will be retired for much longer than their parents and grandparents were. That risks losing the stimulation, the social network the sense of purpose and the income that a job can bring. In our vision document, Prevention is Better than Cure, we set out a number of areas for action, including work and jobs, homes and neighbourhoods, childhood and early years. Included within this will be access to sport, which the noble Lord, Lord Faulkner, raised. I thought that he was no longer in his place but I see that he is now in a more important place on the Woolsack. I was disappointed, given the number of Arsenal fans in my family, that the club did not get a mention in his top six list.
I hope that we can aspire to more than the same miserable journey that the noble Baroness, Lady Grey-Thompson, described, although we can probably imagine it. But I will raise the points that she made with the department, particularly regarding design regulations and co-production.
I am running out of time, as ever. I want to say a word on independence, because that was one of the strongest themes raised by the noble Baronesses, Lady Thomas and Lady Campbell, and my noble friend Lord Borwick. Loneliness can have a huge impact, as we know, on physical and mental health, and the Government have now published the first cross-government strategy on loneliness in England. The action plan to support carers involves six different government departments working together. We are in the process of rolling out a regional stakeholder network, which is a step towards some of the exciting plans that the noble Baroness, Lady Campbell, put forward about user involvement. The noble Baroness, Lady Thomas, also raised concerns about the availability of carers and continuity of care, which I will raise with the relevant Ministers.
As several noble Lords noted, the potential offered by increasing amounts of data brings with it some risks but also important ethical considerations about how we build public trust in our services. Using data to design support for disabled people needs to avoid bias, be accurately targeted and give the individual the greatest possible control. Noble Lords will be aware that the newly formed Centre for Data Ethics and Innovation is playing an important part in shaping our thinking on this area in future.
In closing, I would like to rest on an area that is less one of government responsibility but which is of critical importance to all of us as human beings. In listening to the voice of those with disabilities, we must remember that as human beings we want people to be there with us rather than for us. I am grateful to all noble Lords for their contributions to the debate, and look forward to a world where the gifts and talents of disabled people are fully recognised.
My Lords, I will quickly thank all noble Lords for taking part and for taking a few seconds to pay undeserved compliments, for which I am very grateful. I think that, when the noble Baroness, Lady Thomas, called for more influential disabled people, she underestimated her own influence.
I thank everybody for putting aside other problems to talk about the future. I will have to look out for my mischievous and noble friend Lord Holmes laying plans for my 115th birthday party. I do hope that he will attend it, even if I am not able to do so myself and have to send my apologies—but I thank him very much for the idea.