Defibrillators
Baroness Grey-Thompson Excerpts(10 years, 5 months ago)
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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(10 years, 7 months ago)
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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(10 years, 11 months ago)
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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(11 years, 4 months ago)
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“(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.
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.