Covid-19: Social Care Services

Baroness Grey-Thompson Excerpts

Thursday 23rd April 2020 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I draw attention to my interests in the register, in that I am a vice-president of the LGA. The Care and Support Alliance has reported thousands of people getting in touch with its members over this very issue. The questions I raised at Second Reading of the Coronavirus Bill are still valid and I will be writing to the Minister, because of our three-minute time limit today. To help proceedings, I have nine questions.

There is still a lack of adequate PPE for disabled people and their carers. One young disabled woman reported that she was verbally abused for not having adequate PPE available, even though it is difficult to obtain. Another young woman struggling with PA support was told that she should just go and live in a care home. My first question is: now that care home deaths are being reported, are HMG changing their strategy for this sector? A really serious danger is that some disabled people may be forced to move back to their families, which could be toxic or abusive, because that could appear safer than a care home.

Secondly, for transparency, will HMG report deaths in the community so that the true overall death figure is accurate; if not, why not?

Thirdly, HMG said that the delivery target was 100,000 coronavirus tests a day by the end of April. Is this on target and how many more need to be done? Was this a logistics aim or a medical aim? Will the Minister confirm that disabled people will not be excluded from testing?

Fourthly, will HMG review the carer’s allowance? Unpaid carers are also in a precarious position.

Fifthly, will HMG urgently review the guidance on direct payments? It is confusing and families are at breaking point trying to manage working from home.

However, my biggest concern is that, as I understand it, eight areas have switched on the Care Act easements. I can find the names of six: Sunderland, Middlesbrough, Warwickshire, Staffordshire, Birmingham and Solihull. So, sixthly, as a matter of urgency, can the Minister confirm that these six are correct? It was reported in the Law Society Gazette this morning—but has now been removed—that the other two are Croydon and Hertfordshire, although Hertfordshire has said that it has not triggered easement. This is very confusing for everybody. Can the Minister confirm which areas have triggered easement?

Seventhly, can he explain how these areas have apparently reached crisis point, such that they cannot carry out their duties to disabled people, but nowhere else has? Or are there more than eight?

Eighthly, how are disabled people expected to get advice if they do not know what law their local area is applying?

Finally, ninthly, does the Minister accept that HMG should publish regularly the full list of areas that have switched on Care Act easements and, if they are not prepared to do so, can he explain why not?

Coronavirus Bill

Baroness Grey-Thompson Excerpts

2nd reading & 2nd reading (Hansard) & 2nd reading (Hansard): House of Lords
Tuesday 24th March 2020 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I draw noble Lords’ attention to my registered interests. I am trustee of the British Institute of Human Rights and a vice-president of the LGA, among others.

We are in challenging times, with a significant number of noble Lords not in their usual place. With a Bill of this magnitude, the Chamber would normally be full. I strongly support the comments made by the noble Lord, Lord Newby, that this has proved more than anything that we need to find more modern ways of working, especially when we have had no time to discuss the Bill outside the Chamber. Even more so, the review point for this Bill is incredibly important.

I sincerely thank the House staff who are here today and the NHS and front-line staff for what they are doing. For me, it was a big, personal decision to be here today, especially with the release of the clinical frailty scale. Many would see me, as a wheelchair user, as being no higher than number 7 on that scale. I am delighted that NICE yesterday confirmed that the clinical frailty scale would not be used for certain groups, including those with learning disabilities and cerebral palsy, but many disabled people are still very worried by the Bill. Decisions will be taken by someone else about our usefulness in the next few months that we will have no control over. I am starting to worry that disabled people might be seen as expendable during this pandemic. There is a real fear that this will graduate towards a move to register disabled people and that that will be used to decide future provision.

There is a need for part of this emergency Bill; however, the draconian measures outlined made it a personal necessity for me to be here today. This is a health and social care obliteration Bill by a different name. Alan Benson captured many views when he said that we have been fighting for rights for 30 years and now it is about survival. Inclusion London has said that, “buried deep” in the Bill is

“the complete removal of social care responsibilities, for at least two years.”

I apologise because I will ask the Minister a series of questions. I will email them to his department because there are many. I will also cover presentations and questions that have been sent to me by other noble friends.

What will happen to those stuck in the PIP decision appeal process while we are going through these difficult times?

What will be done to look after or support victims of domestic violence, who we know will be at greater risk?

What specific measures will be put in place for the emergency registration of healthcare professionals for those over 65, some of whom may be considered vulnerable?

What about unpaid carers and child carers? What about the self-employed? There will be additional pressure on them at this time that will be impossible to step back from.

When the Prime Minister and Her Majesty’s Government make announcements on TV, will they commit to having a British Sign Language interpreter so that everybody can understand what is going on?

The Bill is a temporary suspension of most of the duties contained in the Care Act 2014. Is this any more than just a cost-saving exercise? If local authorities are no longer required to meet care needs under the Care Act, will the Minister explain why local authorities would carry out any assessments at all if they did not have to? How will they prioritise?

In yesterday’s debate in another place, a human rights safeguard was raised numerous times. The Government stated that they considered the Bill to be compatible with human rights. However, the analysis was released late on Friday 20 March, after the Bill was laid before Parliament on 19 March, and while some of the analysis is welcome, some of the most worrying clauses have simply not been dealt with. Will the Minister explain what analysis has been done about the unintended consequences on the NHS at this difficult time of removing social care or prioritising health over social care?

Will the Minister advise how social care is guaranteed, because, as I understand it, there is no human right to social care or a positive obligation under the European Convention on Human Rights to meet care needs? Are people to be protected from inhumane or degrading treatment within the provisions of Article 3 or perhaps Articles 8 or 14? I would like to understand that. How will the Secretary of State ensure that social care is protected and what support will be given to decision-makers such as social workers to ensure that they identify and avoid breaches? Given that human rights training is not mandatory, is that something that could be considered?

What happens when a disabled child turns 18 and their adult social care package is unavailable? Does provision just stop?

My noble friend Lady Hollins, who is unable to be in her place, asked me to raise the following questions, which are really important for disabled individuals. If we look to home care for disabled people, what provision are Her Majesty’s Government putting in place for European care workers who have not been able to return to the UK? What personal protective equipment will be made available for carers? Can Her Majesty’s Government look at parking charges, so that carers who do not want to use public transport are able to drive? Will there be extra funding for disabled employers or home care agencies to enable them to pay an additional income premium or quarantine payment? What about carers who have to self-isolate in their employer’s home to ensure they do not put their disabled employer at risk? How will care agencies or disabled employers fund these periods of advisory self-isolation? Will the Government require local authorities to keep a record of those who have had their support reduced or cut, so that their support packages can be reinstated when this emergency is over?

What about people with dementia? Can the Government assure us that they will not be discharged to inappropriate care homes without staff who have had dementia training? Can the Government give a financial guarantee to families living with dementia—that they will not be retrospectively charged for inappropriate care home placements once the pandemic is over?

The St John Ambulance contacted me this morning. It said that it is ready and wants to help and would very much welcome a call with the Minister. What about paid leave and access to emergency volunteering certificates for it?

The changes to the Mental Health Act are just as concerning. Does the Minister consider it proportionate for individuals to be sectioned by only one medical professional, who is no longer required to be acquainted with the individual? I hope no amendments will be tabled that amend other major pieces of legislation. This is a time for unity, not for introducing other far-reaching changes on highly contested issues.

At different times, in-patients in mental health care facilities may face increased restraint and seclusion. The powers in this Bill could lead to a deterioration in an individual’s conditions where carers or families cannot manage, leading to individuals being admitted to an in-patient unit in crisis. No one should be admitted because of a failure of social care. Can the Minister assure the House that, should the powers in this Bill be activated and as a consequence should people be admitted to in-patient settings because of a failure of care, an independent care and treatment review will be carried out as soon as this emergency has ended, and not just for people detained in long-term segregation? The Bill’s provision to relax the measures around NHS continuing healthcare assessments could see some of these people discharged from hospital without the right support, putting them at additional risk of readmission. Delays to NHS continuing healthcare assessments will undermine this programme of work.

Like many others, I have huge sympathy for what the Government are trying to do right now, but a Bill of this magnitude will be life-changing for disabled people. I look forward to hearing the Minister’s response.

Obesity

Baroness Grey-Thompson Excerpts

Wednesday 18th July 2018 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Lord, Lord McColl, for his ongoing interest in this subject, although I suspect that I may have some slightly different views. I also take this opportunity to welcome my noble friend Lady Boycott. When the list of new Peers came out, my roommate, the noble Baroness, Lady Kidron, was delighted to see her on the list, and she is so sorry that she is unable to be here tonight. I draw your Lordships’ attention to my declaration of interests: I am chairman of ukactive, which works in the area of physical activity.

I am particularly interested in childhood obesity. We now have a generation of children in primary school who are more likely to die earlier than their parents because of obesity, so I am a huge supporter of the Daily Mile and structured play. Measuring children is incredibly important because we must know what we are dealing with. We do not allow our children to do trigonometry without doing basic maths but we try to teach them sport without teaching them basic physical literacy. So there is a long list of things that we could do in schools to improve physical activity and tackle obesity.

Sadly, we are not going to be able to turn back the clock to a time before fast food and coffee-shop pastries on every street corner, but moderation is part of the answer. Of course it is about what you eat, but it is also about the energy that you expend. I believe obesity and physical activity and exercise should be inextricably linked. It is a complex issue but we have to look at the whole self, the whole individual, to ensure that they are mentally and physically well. It is not just about the size of our waistlines; it is about the health of our hearts. A lack of physical activity causes up to 37,000 premature deaths in England alone. Physical inactivity is the fourth-greatest cause of disease and disability in the UK. Globally, it is linked to more than 5 million deaths per year—similar to the number of lives lost to smoking, and higher than the number caused by obesity. The key priority should be to tackle the obesity and inactivity crises together, in a way that recognises the complexity of the issue and takes a holistic approach to improving the nation’s mental, physical and nutritional health.

I was delighted with the second childhood obesity strategy, which was recently published. However, what are the Government doing to adopt a comprehensive approach that promotes the nutritional and physical activity sectors working together to tackle obesity in the UK? Physical activity has a significant benefit for everyone. Not only does it have a major positive impact on weight management; it can also improve the health of those from the youngest to the oldest in society.

We need to look much more closely at what happens in the workplace. PricewaterhouseCoopers estimates that workplace absenteeism costs the UK around £29 billion per year. That, too, is linked to inactivity. I am pleased to see that progress is being made in this area. Earlier this year, the Government and ukactive published guidance for workplaces, encouraging them to prioritise the health of their employees and to take part in physical activity. But we need to do more. I know from personal experience that although I can walk a couple of miles around this building every day, we have to find different ways of integrating physical activity into our lives. It might mean going to the gym or getting off the bus a couple of stops earlier. It must be something that is filtered through the day, not something that is done just a couple of times a week. This is about educating people to think about how they can be more physically active and about what they consume.

The guidance is promising but, alone, it will not improve health or activity levels or reduce the prevalence of obesity among the people of the UK. We need a campaign to build on this guidance. There are proposals to expand the cycle-to-work scheme to include a much broader array of health-related purchases. This is important and could generate savings of around £240 million per year.

Let us think about the danger that we are putting young people in with obesity. I have a 16 year-old daughter. My aspiration for her has never been that, due to obesity or physical inactivity, her life will be shorter than mine. I urge the Government to look at this problem in a joined-up manner so that we can tackle it and help future generations of our young people.

Children and Young People: Obesity

Baroness Grey-Thompson Excerpts

Tuesday 17th April 2018 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Baroness, Lady Walmsley, for tabling this debate this evening and I declare an interest as chair of ukactive and also as vice-president of the Local Government Association.

I warmly welcomed the Government’s childhood obesity strategy when it was released. It is important to talk not just about what and how much children eat, but the impact that it then has as they grow to become adults. Of course, what we eat makes a difference, but it will be no surprise that I am going to talk about what we can do in terms of physical activity. I can perhaps answer the question of the noble Lord, Lord McColl, about maintaining weight. I know that when I was an athlete, training 12 to 15 times a week, 50 weeks a year, was very good for maintaining weight. You can eat quite a lot when you train that hard, but that is not very realistic. I know now how incredibly important physical activity is for my daily life, enabling me to push my own chair and lead an independent life.

We now have the least active generation of young people for 30 years. The fittest now would be among the least fit 30 years ago and we have a generation of children who are likely to die before their parents—nobody wants that. As noble Lords will imagine, I am a strong supporter of good-quality activity in schools, but there are 168 hours in a child’s week and just two of those are devoted to physical activity. In May 2015 ukactive produced a report called Generation Inactive which revealed that half of children aged seven were failing to meet the CMO’s 60-minute daily activity guidelines and called for Government to support head teachers to take a whole-day approach to physical activity and ensure that no child was left behind in the right to a healthy and happy childhood. An inactive childhood can shorten a child’s lifespan by up to five years and lead to long-term health problems, such as type 2 diabetes and heart conditions, and those trends go into adulthood. Inactivity costs our nation £20 billion a year.

I want to draw noble Lords’ attention to ActiveMiles. It is a fantastic way of getting children active. There are many different forms and I would happily facilitate a visit for anyone who would like to see it. It is incredible; it is cheap and it transforms how young people build their own confidence and behaviour, but linked to that are important lessons on healthy eating. We have to ensure that quality is a calling card of anyone wishing to work with schools and that there is a clear and consistent way through which schools can identify what will and will not work for them. Shockingly, the Government spend more on childhood obesity—£27 billion a year—than on primary education, which costs £26 billion a year. Inactive habits are becoming increasingly entrenched among today’s children and young people and if we do not take action now it will only get worse.

This is a complex issue. We need a holistic approach in order to improve the mental, physical and nutritional health of children nationwide. So I ask the Minister, with the soft drinks levy, while it is fantastic that a number of companies are looking to change their products, has he or his department recalculated what the figures might look like, and will he guarantee money available to schools? Can he update me on the sustainability plan for the premium beyond 2019? Research by ukactive has shown that British schoolchildren are losing 80% of fitness gained during term time through “inactive summer holidays”. These findings also demonstrate that the poorest 25% of primary school children experience a drop in their fitness levels 18 times greater than the richest 25% over the school summer holidays. That is why this summer we are running a pilot in 25 schools which will look at inactivity, but also at education, holiday hunger, learning loss, personal development and, very importantly, mental health in young people.

Finally, I would like Her Majesty’s Government to consider how we measure our children. We do it in literacy and numeracy, but a slim child does not automatically mean a fit and healthy child. We should measure children’s fitness. I am not talking about sticking a child on a treadmill and making them do a V0₂ test: I did that when I was an athlete and it is horrible. It is not about that but about actually understanding the starting point for our children. I believe that the Government should extend the national child measurement programme to measure cardiorespiratory fitness and examine data from Sport England’s active lives survey, which monitors children’s attitudes towards their health and fitness, in addition to the current measurement of BMI. While being informed by academic expertise and rigour, this should be developed in a way that is fun, inspiring and engaging for young people, with young people themselves central to its design, as opposed to people speaking on their behalf. That is why I was delighted that the noble Baroness, Lady Walmsley, had voices of children tonight: we need to understand what children want.

The group ukactive is currently working on a number of policies to address childhood inactivity and has recently launched a major new consultation. We will be reporting on that later in the year. It is not too late to change the opportunities that we give young people and help to produce a better life expectancy, but we have to do something now.

Wheelchair Users

Baroness Grey-Thompson Excerpts

Thursday 21st April 2016 Lords Chamber

[Lord Prior of Brampton]

As the noble Baroness knows, the criteria are local at the moment. The point of collecting the data and developing a tariff, which takes into account assessment, the equipment and repair and maintenance, is to have local commissioning against the national standard.

[Baroness Grey-Thompson (CB)]

My Lords, I declare an interest as chair of the national Wheelchair Leadership Alliance. Does the Minister recognise that not getting this service right is increasing the burden on the NHS? The cost of fixing a pressure sore alone is about £150,000, whereas providing the right cushion costs £400, so by improving wheelchair services we can save the NHS money rather than costing it money.

[Lord Prior of Brampton]

The noble Baroness is absolutely right. Getting the wheelchairs fitted properly and making the right assessments can save the NHS a fortune. It is outrageous that we have not tackled this before. The tragedy of the NHS is that if you do not have a tariff or target, you do not get the money. We are developing a tariff. The charter developed last year by the wheelchair alliance is an outstanding document.

National Health Service

Baroness Grey-Thompson Excerpts

Thursday 14th January 2016 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, in the time I have today, I am going to concentrate on a very specific area, that of wheelchair services. I declare an interest as chair of the National Wheelchair Leadership Alliance, which was set up after NHS England supported two national summits, and a huge weight of academic evidence and case studies offered a compelling case of why action was needed. A 10-point charter was developed which received significant support from the public, Members of both Houses, CCGs, the industry, wheelchair services and charities, to name a few.

It is simply not understood how important the right chair is. In our campaign, I sat in a wheelbarrow. I am not proposing this as a cheap solution to wheelchair services, but in a few minutes it became very painful and it provided a shocking image. We chose a wheelbarrow because it may have a seat, wheels and handles but it does not give independence. That is what the wrong chair means.

During this work, we have seen some dreadful cases, including long waiting times and people dying before they received their equipment. No one is trying to do a bad job—quite the contrary—but it is a Cinderella service and a complete postcode lottery. A cushion can cost £250, while a pressure ulcer from the wrong cushion can cost £100,000 to fix.

The mandate consultation came at a perfect time, and I am delighted that we merited mention in the response. I understand that the mandate is a strategic document and is not meant to be prescriptive, but the response dismisses a focus on individual services. This contradicts the Government’s aim for integrated healthcare, because wheelchair services may be a single service but the outcomes have an impact on every government department. Because of having the wrong chair or not having a chair, children are missing school and people are missing work; it is costing the NHS significant amounts of money through injury and harm. If disabled people cannot get to work, how can Her Majesty’s Government hope to halve the employment gap for disabled people? One person told me that through access to work she would have five-sevenths of her specialised chair funded, but she had to leave it at work at the weekends because it was not for personal use. That is totally ludicrous—how could she get to work in the first place?

I know we have limited time, but I have a few questions for the Minister. Will he elaborate on whether further work has been done on the cost-benefit of providing the right wheelchair? Will he provide an update on the work of NHS England’s data dive and tariff, which is very welcome and crucial to moving this debate forward? Will he confirm that the number of responses to the mandate consultation in this area was among the highest received? Why have the wider benefits of providing the right wheelchair not been taken into consideration? I am not asking for more money; I am just asking for a genuinely integrated approach. Finally, as we are limited for time, can I meet the Minister, as this has been a problem for 30 years and affects millions of people?

[Viscount Younger of Leckie]

My Lords, we are tight on time. May I give a further reminder that in the final stages of this debate, Back-Bench speeches should be concluded when three minutes first appears on the clock?

Defibrillators

Baroness Grey-Thompson Excerpts

Tuesday 24th June 2014 Grand Committee

[Baroness Grey-Thompson (CB)]

I congratulate the noble Lord, Lord Storey, on tabling the debate this afternoon. I felt compelled to speak after a chance encounter with a young girl and her family who I met at the Paralympics in 2012. Ruby is a wheelchair user because she had a heart attack in school at the age of five. She is now 10. Luckily, and amazingly for Ruby, her teacher had been on a course—I think just a week before—and knew what she had to do to save Ruby's live. She was starved of oxygen for 40 minutes and left with many severe impairments and a heart condition. Apart from one or two isolated cases that I had heard in the news, this was the first time that I had met a child who had had a heart attack, and it had a big impact on me. Her parents are amazing and they give her an incredible and fulfilling life, but it led me to wonder whether, if there had been a defibrillator in the school, her life might now be very different.

In researching for this debate I was contacted by a number of people. One or two raised some legitimate questions about the potential cost of having this equipment in every school and sports club versus the number of heart attacks that occur. In the end, all members of the public who got in touch were in support of equipment in every school. I have seen figures suggesting that up to 12 young people a week are affected by this and perhaps the Minister would clarify the scale of the problem. Obviously the cost per unit versus the cost of medical treatment constitutes a significant saving, but this is not about money. It is about saving young people’s lives—and other people’s lives. I was contacted by a teacher who said that they had a defibrillator in their school; a teacher had had a heart attack and survived.

I was also contacted by a lady from a local community group who said that a person had had a heart attack at their centre and died. However, there was a lot of reluctance to have equipment in the centre because people were not sure about how to use it or about the safety. Most of the time when we think about defibrillators, we think about something from a movie or TV when everybody stands back and it is all very dramatic, rather than the modern technology which, I have been assured, is fool-proof. Someone puts the pads on and the machine takes the decisions. No one has to make the decision about whether it is a heart attack or not, the machine does that.

We also tend to think of this occurring when somebody takes exercise. There was a report in the Hampshire Chronicle on 29 March 2014 about a Mountbatten School pupil in Winchester, Sam Mangoro. He nearly died when he had a heart attack in a PE lesson. He was just 16. Again, he was really lucky. His life was saved by trained members of staff who had access to a defibrillator. As a result of this, the parent-teacher association of another school in the area, the Westgate School, purchased one. However, these are really hard decisions for head teachers to take. Put “defibrillator” and “schools” into a search engine and there is a list of companies willing to sell this equipment. How does a head teacher, a parent or somebody raising money know what is the right equipment to buy?

I was therefore delighted with the Department for Education announcement that the Government are working to identify suppliers. They will look at competitive price, because that is important, but also at the statutory guidelines and advice for schools on supporting pupils with medical conditions. It is important that the Department for Education and the Department of Health take a lead on this, to guide PTAs and schools and make sure that they buy the appropriate equipment.

This should also be on the school curriculum. My husband, who is a triathlon coach, recently went on a first-aid course and learnt how to do heart massage. It reminded me that the last time I did anything like this was when I was a Brownie a very long time ago. Until my husband mentioned it, I thought that I knew what I was doing. I remembered that the numbers five and two were involved, but I could not remember whether it was how many times I was meant to breathe or how many times I was meant to press somebody hard. It made me realise that if I saw somebody have a heart attack, I would be extremely reluctant to get involved, because I would be more worried about causing any more damage than doing something that could help. My daughter helpfully joined the conversation. She is 12 and in school she was taught what to do, using the song “Nellie the Elephant”, which is a brilliant way of doing it, and she would be able to step in and help.

Since I saw this debate tabled, I have noticed signs in many more shopping centres and elsewhere showing where defibrillators are. It made me realise that I am not sure where they are in the Palace of Westminster. I suppose that we are lucky to have a number of eminent doctors or professors here, so we are in a pretty good place if anything should happen to us.

Most sports clubs are very small. They are run by volunteers and do not have a lot of money, so the cost of installing such equipment would be prohibitive even though I think that a lot of them would want it. If there were to be a scheme for schools, it would be an excellent idea to extend it to local sports voluntary clubs so that they would be able to access the right equipment. It is also important that we carry on pushing training courses. I know that they are provided in many sports, but for a lot of voluntary sports clubs it raises issues around training, insurance and the worry about what would happen.

I did not realise until I saw this debate tabled that you can get a free app for your phone which enables you to find the location of your nearest defibrillator. It also has an emergency 999 button already on the screen so that you do not have to press all the buttons. I have not tried it yet, and hope that I will not have to, but things like that should be publicised. It is in that moment of panic, when you see something happening, that you need all the help and guidance that you can get.

We should take this matter very seriously. I want to see defibrillators installed in schools and sports clubs and generally more awareness about what can be done to help people if they suffer a heart attack.

Health: Innovative Medicine

Baroness Grey-Thompson Excerpts

Tuesday 1st April 2014 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for tabling this debate. This is not a subject which I have previously spoken about in your Lordships’ Chamber, but a chance conversation in the corridor encouraged me to listen, and then to speak.

The subject of what medication should be given to patients with life-threatening conditions to ensure good-quality life is very interesting to me as, linking it to other work that I am doing on disability rights and quality of life, it has helped me to further examine the relationship between the public’s view of being sick or ill and being disabled. All too often the impression is given that if you are disabled, you must probably also be ill and therefore have a high cost attached to you. It is important to understand that the two are not synonymous.

I am interested in this subject because I have a number of friends who have been involved in various drugs trials and, while I do not require any medication, in my time as a wheelchair user I have certainly been offered experimental surgery to “fix” what were seen as my problems. This is of course not related to the issue of medication. However, one of the procedures that I was offered was a leg-lengthening operation when I was already paralysed; it would have made no difference to whether I could walk or not, or my ability to use callipers. Then years later, it was revealed on a television programme as an innovative procedure.

Concerning “life-threatening conditions”, I, like many others, would like to see further clarification on what that definition involves. I would also like to see what other options could be explored, such as developing physical literacy, physical health and healthy lifestyles. I know that this happens in many cases but I would like to be assured that this is the norm because, while medication is part of the answer, it is not the only answer. Many of my friends experience quite a lot of difficulties with urinary tract infections, but I have not had one of those since I was 13. I think that is because of my training and being active, and all the other things that are part of a healthy lifestyle.

I was interested to read the documentation provided in the Library, in which the Health Secretary, Jeremy Hunt, said:

“Making Britain the best place in the world for science, research and development is a central part of our long term economic plan”.

He added:

“Most people are only too happy to altruistically volunteer for medical research if it helps save lives”.

Encouraging investment in the UK is important in the light of some pharmaceutical companies choosing to reconsider where they are based and what research they are involved in. It is a useful aspiration to have, but we must of course be conscious of the balance between companies funding research for ultimate profit and giving people positive options.

In researching for this debate, I found many cases where hundreds of millions of pounds were spent on trials that may or may not be successful. My husband is a research chemist, so I have a little understanding of the cost of developing and testing new products, although in his case it is high-temperature chain oils. I also think that many of us who are not medics or involved in that profession often do not understand the cost of some of these medications. I was in the USA recently with my family when my daughter developed an ear infection. A trip to see a nurse practitioner was $100; it was another $100 to see a doctor and a very small bottle of branded medication was $400.

I will also briefly refer back to a Question asked by the noble Lord, Lord Clement-Jones, which is listed in Hansard as HL 991. The noble Earl responded by saying that:

“We are exploring ways in which patients can continue to benefit from innovative cancer drugs at a cost that represents value to the NHS, in the context of developing the new pricing arrangements for branded medicines”.—[Official Report, 25/6/13; col. WA 111.]

This cannot be simply about businesses investing in the UK. Somewhere, we have to balance the budget.

Within this, I also believe that doctors have tremendous power to influence patients. I have been hugely fortunate and have had some amazing doctors in my life. In fact, without the NHS I would not be here. However, it is important to have appropriate guidelines for explaining to patients which drugs they are being offered, and for them to know whether they are new drugs or medication that has been previously been developed but is now being suggested for new indications. In terms of research, it is absolutely imperative that we have the appropriate number of people using medication to report back the data so as to be able properly to monitor it. There is no doubt that this work is important for many people who have life-threatening conditions. I look forward to future debates in this area.

Olympic Legacy (S&T Report)

Baroness Grey-Thompson Excerpts

Wednesday 11th December 2013 Grand Committee

[Baroness Grey-Thompson (CB)]

My Lords, I thank noble Lords for allowing me to speak briefly in the gap.

I am a huge fan of the benefits of sport and exercise science if it is used in the right way. In my career I have undergone numerous tests, aerodynamics, skinfold measurements, maximum lung capacity testing, something called a VO2 test—there is nothing like pushing on a treadmill until you feel you are about to collapse, and then having needles stuck into you—and I can confirm that ice baths are indeed vile. On one memorable birthday, my husband bought me three metres of aluminium so that I could build a racing wheelchair that was one kilogram lighter than that which was commercially available.

I agree with the noble Lord, Lord Moynihan, about history. There is an assumption that not much has gone on before and that sports science testing has been used for a long time. I also agree with the noble Lords, Lord Krebs and Lord Addington, that athletes do not want to be used as guinea pigs—I certainly did not—unless it is your own idea, and then it is marvellous. However, it is quite difficult sometimes to get sports scientists to think about doing things in a different way.

Within limited careers, it is important that we disseminate the information so that it goes through to quality coaching, the teaching of good physical literacy, and enables us to educate our young athletes right through to senior squad level, so that they remain injury free for as long as possible.

One of the problems I see going forward—and I have seen way too much of it—is that of literally reinventing the wheel: we do not learn from the past, somebody comes along with a new idea and sometimes wastes money doing things that have previously been done. Overall, lottery funding has significantly helped our athletes by ensuring they get the right support at the right age. As an athlete who benefited from it, I think that is tremendous. We need to keep urging national governing bodies to invest and use sports science. Some sports are using less of it now than they were 15 years ago.

Overall, there has been a positive influence on the general population. The design of sports equipment at Paralympic Games level has led to better design of day chairs. They are lighter, stronger and more aesthetically pleasing. Certainly in amputee running, the work that has gone into the development of prosthetics for sprinters has had a massive positive influence on non-runners in terms of their walking gait and equipment, and it is more generally accepted that they deserve really good prosthetic equipment. There have been some very positive things that we need to keep pushing forward.

Finally, I commend the work of the committee. I am very pleased and I am grateful for being allowed to speak.

Care Bill [HL]

Baroness Grey-Thompson Excerpts

Tuesday 16th July 2013 Lords Chamber

Moved by

[Baroness Grey-Thompson]

88Q: Clause 13, page 12, line 17, leave out subsection (7) and insert—
“(7) Needs meet the eligibility criteria when—
(a) there is, or will be, an inability to carry out several personal care or domestic routines, and/or (b) the individual will be unable to maintain control over several aspects of their day-to-day life, or(c) involvement in several aspects of work, education, training or recreation cannot or will not be sustained, and/or(d) several domestic, family and personal relationships cannot or will not be sustained, and/or(e) there is a risk of abuse or neglect; they form part of a combination of needs described in paragraph (a).”

[Baroness Grey-Thompson]

My Lords, Amendment 88Q relates to the eligibility for social care. This is a probing amendment in order for the Committee to debate the most critical area of social care reform for working-age disabled people—that is, whether they are eligible to receive the care and support that they need to lead independent lives.

The Government’s regulations have now confirmed that the Care Bill will be nothing more than an unachievable aspiration for more than 100,000 working-age disabled people and more than 150,000 older people who have significant care needs but will not be eligible for support. It is not my intention to debate the nuances of the regulations that have been published in draft, and the Minister would, rightly, tell me that this is not the time or the place to do so. However, it is my intention to focus on the policy principle concerning who should be eligible for social care and support. I also thank the Minister in another place for taking the time to meet me yesterday to discuss my amendment.

The difference that good-quality social care can make cannot be underestimated. It is the difference between being isolated, living locked up and staring at the same four walls or being set on the path to living a full and independent life. The recent Time to Invest in Care publication described the situation faced by David, a 23 year-old man with autism and schizophrenia who currently lives with his parents. David needs support to engage in activities and look for suitable jobs. He needs guidance to gain a better understanding of social rules and to develop his awareness of dangers in the community. He also has difficulty in understanding boundaries in regard to friendships. As a result of receiving the right social care and support, David has a volunteering job and is now working towards moving into supported living and leading an independent life. This is the difference that the right social care support can make.

However, under the current eligibility system David has been assessed as having only moderate care needs. This means that, under the eligibility regulations set out alongside the Care Bill, David would not be entitled to support and his future would therefore be far less positive. Essentially, the Government’s regulations mean that David should not receive this formal social care support.

That brings me to the policy intention of the regulations. I very much welcome the pause in the proceedings of the Care Bill in this House so that time has been allowed for us to look over the regulations that have now been published in draft. I have read them with interest and there is much in the direction of them that is to be welcomed. They represent a real improvement on the current system. Particularly positive is the focus on well-being and, specifically, the inclusion of shopping and managing household finances in the definition of basic household activities. This appears to be a very progressive step which joins up the regulations with the very first clause of the Bill, which has been widely praised, and I congratulate the Government on that. It is also a very brave and positive step to end the postcode lottery in care provision.

However, I have very real concerns about the Government’s intention—as stated by the Minister in another place in his foreword to the draft regulations—that in terms of practical outcome the regulations will be equivalent to “substantial” under the current system. This will be devastating news to the hundreds of thousands of disabled and older people with significant care needs who will be excluded from receiving formal social care.

The Minister is aware that historic underfunding of the social care system, the pressures of an ageing population and a 33% reduction in local council budgets by 2014-15 have led to many local authorities raising the threshold at which disabled and older people become eligible. In 2005, 50% of local authorities set their eligibility criteria at “moderate”. By 2012, 84% had set the eligibility criteria at the higher level of “substantial” needs. The result is that since 2008 90,000 people have fallen out of the care system.

The excellent report, The Other Care Crisis, illustrates the impact that this has had. Four in 10 disabled people who receive social care support say that it does not meet their basic needs, such as washing, dressing and getting out of the house—all things that we take for granted. The Care Bill will not resolve this crisis in care if the regulations are set at the level currently proposed. In fact, by setting a national minimum threshold at a level which maintains this crisis, the Government appear to be reducing their ambition for their social care reforms.

One point which has not been picked up is that the Government also appear to be reducing their ambition for the cap on care costs. While it is a welcome and important measure to attempt to cap the catastrophic costs of care that some people face, particularly in their old age, the Government have made it clear that the cap will only be triggered once an individual has been deemed eligible for care. Setting the bar for eligibility too high effectively means that there will be hundreds of thousands of people who think that they will not have to sell their homes to pay for care in their old age, yet will not be eligible for the cap itself. They will still have to pay for the cost of their care, even well above the £72,000 threshold, unless they are deemed eligible by their local authority.

For working-age disabled people the cap on care costs is irrelevant. The recent joint parliamentary inquiry, co-chaired by my noble friend Lady Campbell of Surbiton, highlighted the fact that the introduction of the cap was never designed to answer the care crisis for disabled people under 65. The inquiry was clear that the most crucial aspect of reform for working-age disabled people is where the eligibility for care is set. For them, this is the difference between living an independent life and spiralling into crisis.

I also have very real concerns that those disabled people who are set to lose out as a result of the Government’s welfare reforms will be the same people who will lose out on social care. It is highly likely that an individual who has significant care needs, but who falls just short of the current threshold, will be one of the half a million disabled people who will not get the personal independence payment under the new system. This means that not only will the social care that enables them to live independent lives be beyond their reach, but their financial independence will also be threatened further.

It appears to me that there is a clear group of disabled people whom the Government deem not quite disabled enough to receive support. Providing them with just enough support to remain independent will prevent them spiralling into crisis, costing local authorities much more money in crisis emergency care. I also believe that there is a clear economic argument to be made here. Economic modelling, carried out by Deloitte and published in the Ending the Other Care Crisis report, found that an investment of £1.2 billion in a lower eligibility threshold, equivalent to the current “moderate” level, would lead to substantial returns across government. This would include a £70 million saving to central government through increased taxes and reduced welfare spending. There would also be a £570 million saving to the NHS and local government through the avoidance of expensive crisis care.

The Government made a very welcome investment of an additional £2 billion at the recent spending review. I urge the Minister to use this money to invest in a lower national eligibility threshold, not just to ensure that his ambition for a care-based system on well-being becomes a reality, but for the savings it could generate as well.

In conclusion, as Members from across the House have repeatedly made clear, the Care Bill is a very good piece of legislation, and is welcome. However, we must make sure that disabled and older people who have significant care needs do not fall out of the social care system. If the eligibility threshold continues to be set at the level the Government have proposed, hundreds of thousands of disabled and older people will be shut out of the care system. There will be real concerns that the Government’s admirable focus on well-being will be far from reality for these people. I beg to move.

[Lord Low of Dalston]

My Lords, I am glad to support Amendment 88Q, put forward by the noble Baroness, Lady Grey-Thompson. As she has explained, the amendment seeks to ensure that the national eligibility threshold, a welcome feature of the Bill, is set at a level which will not exclude this group of more than 100,000 disabled people with significant needs from the social care system.

I would like to focus particularly on the role of the eligibility threshold in creating a truly preventive care system. While I welcome the explicit duty on local authorities actively to take steps to prevent delay or reduce the need for care and support, I fear that the regulations published last week on the national eligibility threshold will impede the realisation of this vision. In confirming their intention to set the threshold at a level equivalent to “substantial” under the current criteria for fair access to services, the Government would exclude more than 100,000 disabled people with moderate care needs from the care system. These are people who need support to get out of bed in the morning, wash, eat, get out of the house and participate in the community—the most basic of tasks that you need to be able to do in order to live a fulfilling life.

Moreover, denying disabled people with moderate needs the care and support they need is a false economy. If their needs are not met in the care system there is a real risk that they will escalate to a point where they have to be dealt with further down the line once they reach crisis point. This does not come cheap. It could lead to longer hospital stays, frequent readmissions, even the need for residential support, not to mention the lost tax revenue resulting from disabled people having to give up work as a result of losing social care support. This happens in one in three cases of working-age disabled people who need care.

Take, for example, the case of Elizabeth, of which I have been made aware. She used to have seven hours of key worker support a week to help with managing her bills and shopping. Following a letter from her council she was told, with no consideration of the impact it would have on her independence, that her hours would be reduced to three per week. As a consequence of losing this support she fell into a crisis. As she said, “I did have a job—I was working with disabled people—but I left because I couldn’t cope. I thought it wasn’t fair on the clients. I was going through a bad time, overdosing a lot”.

This case illustrates how only a small amount of timely support can pay real dividends. Support with shopping and managing her bills helped Elizabeth maintain an independent life. However, as a consequence of losing her support she was left in crisis, resulting in her making several suicide attempts and becoming reliant on more expensive medical services.

Under the current draft regulations Elizabeth would be shut out of the care system. I have real fears that cases such as hers will be replicated up and down the country. Indeed, despite the Government’s supportive words about prevention I am concerned that they are effectively regulating for prevention to be taken out of the care system. The consultation document published last week on the draft minimum eligibility threshold states that for those people who are not eligible for care— namely, the 100,000 disabled people with moderate care needs—local authorities will make available universal support, including information, advice and preventive services.

However, this implies that coverage of such services is comprehensive, consistent and of adequate quality when we know that this is not the case. The reality is that many such services have already been axed or are at risk of closure. Indeed, research by the Red Cross has found that nearly two-thirds—64%—of councillors said that their local authority had cut or frozen funding for prevention and lower level social care since the last local elections. This means that universal services will simply not have the capacity to provide the adequate preventive support that the Government intend. People who are not eligible for care will continue to face a postcode lottery of support and will be allowed to fall through the gap between the care system and universal services.

I end by emphasising that setting eligibility at a lower level is the essence of prevention. We cannot have a system where you have to reach crisis point before you can get the support you need. Early intervention and preventive support can also have significant financial benefits. Research undertaken by Deloitte on behalf of disability charities found that investing in people with lower levels of need provides a net positive return of at least 30% to the Government. I therefore hope that the Government will be prepared to take these points on board and ensure that the regulations on eligibility underpin rather than undermine the vision of a truly preventive care system, glimpsed in Clause 2 but, sadly, not yet fully followed through in later clauses.

--- Later in debate ---

[Earl Howe]

I know that my officials have looked closely at that modelling. I have not yet had an opportunity to look at it but undertake to do so. However, in all such matters a judgment is needed as to how money is best spent. No doubt there are good arguments for the Deloitte point of view, but, as I have already outlined, we think that if one has to spend money of that order, it is better spent in the way that we propose. Nevertheless, this is a debate that we can usefully continue, and I shall be happy to do that between now and Report, and also at Report stage itself.

[Baroness Grey-Thompson]

My Lords, I thank all noble Lords who have taken part in the debate, and also the Minister for his response. My amendment, which is about who is eligible and who is not, addresses the main crux of the Bill. I shall respond to a few points that noble Lords have raised.

I agree with the noble Lord, Lord Warner, when he says that we need to be realistic. However, my view still is that a small amount of support for working-age disabled people or older people—to keep them active, to keep them in their own homes and to support them in the best way—will actually save us money in the long term. Moreover, expectations have been raised about what older people can expect.

There is still a lot of work to do on the draft regulations to encompass the needs of working-age disabled people and older people, and to ensure that we keep the consistency. As things stand, giving someone the ability to have an assessment of the care that they can expect, but no actual support, does not help them; it just raises their expectations in a slightly misleading way. Again, disabled people and older people are paying the price of the economic downturn. Although this is not the right time for it, I would welcome a really honest debate on what the Bill is about. Is it about saving money, or is it about the well-being of certain groups of people? As ever, disabled people and older people seem to be at the bottom of the priority list.

I welcome the fact that the Minister has said that he will go away and look at Deloitte’s economic modelling. I think that we would probably agree to disagree about where that is at the moment, but it would be beneficial to try to find the best way forward in that context.

The noble Baroness, Lady Jolly, raised two very important points, the first of which was about the seamless transition. That is incredibly important. This is about not just who makes it to the support level, but what we do with people who are just outside that category. It is crucial that we get the advice and the signposting and all the support absolutely right, to make sure that people are not falling through the cracks. Her second point was that the regulations are still in draft. The Minister in the other place has offered me the opportunity to continue this discussion on the eligibility criteria, and I very much welcome that, because it is a recognition that the draft regulations can be improved.

It is also important that we have a constructive continued discussion on what the draft regulations mean in reality. There is lots of expertise both inside and outside your Lordships’ Chamber, and we must use those people to get to the best place, and use the time we will have in the summer leading up to the formal consultation. I do not see all this as just a negative discussion. There is much work to be done, but I see that as a huge opportunity to improve the regulations and get them into a much better form for everybody. At this stage, however, I beg leave to withdraw the amendment.

Amendment 88Q withdrawn.