Long Covid
Baroness Scott of Needham Market Excerpts(3 years, 3 months ago)
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Baroness Scott of Needham Market (LD)
My Lords, I thank the noble Baroness, Lady Thornton, for bringing this important subject to the House. I have a very close relative who has had ME for a number of years, and I have seen at first hand how debilitating and life changing it can be. I have become the vice-chair of the APPG for ME and I have talked to hundreds of ME patients who have had their condition ignored or ridiculed. They have been subject to inappropriate and sometimes dangerous medical intervention, and they are struggling with an employment and benefits system that simply does not acknowledge the realities of their condition. Those 250,000 ME patients are now, in effect, being joined by over 2 million long Covid sufferers.
It is worth starting by pointing out that debilitating post-infection syndromes such as long Covid are not new clinical entities. In American medical literature, ME-like symptoms are described as far back as 1934. When ME was first noticed in this country it was described as “yuppie flu”, but in fact these syndromes affect millions of people suffering from a range of viruses, including those living in poor, third-world countries.
The Institute for Fiscal Studies estimates that one in 10 people with long Covid have given up work, with “persistent labour market effects”. This month’s Lancet said that
“post-acute infection syndromes could pose a substantial public health burden in the near future if appropriate measures are not … taken”.
Despite the huge economic cost they inflict, as the noble Lord, Lord Bethell, said, post-viral illnesses have been neglected, dismissed and under-researched for far too long. We still have no diagnostic blood tests for either long Covid or ME.
As well as the breathlessness, chest pains and loss of taste or smell which characterise long Covid, patients exhibit a cluster of symptoms such as the debilitating fatigue, post-exertional malaise, cognitive dysfunction, PoTS and sleep disturbances that are also diagnostic of ME and other post-infection syndromes. While all the funding for research into long Covid must be welcomed, it is disappointing that some researchers are still ignoring or are not aware of what has already been learned about what may be causing ME and how this could help us to understand the causes of long Covid.
Almost 40 clinical trials into possible treatments for long Covid have been registered, some involving interventions that have already been assessed in ME. Some of these treatment trials have small sample sizes or no control groups. The lessons do not appear to have been learned from the use of poor-quality methodology in many clinical trials involving ME. Some health professionals who are managing people with long Covid are unaware of or ignoring what we have learned about the management of ME and other post-infection syndromes, on activity and energy management particularly. The ME charity sector produces excellent information on symptom and energy management, as does the new NICE guideline, but people with long Covid are often simply unaware of this information, as are many health workers.
Another important lesson that needs to be learned from ME is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and are labelled as having a post-viral syndrome. There are some very disturbing cases being reported of people having long Covid when, in fact, they have another medical condition. A Suffolk councillor recently featured in the news when, it turned out, her long-standing diagnosis of long Covid actually proved to be lung cancer.
Research into the cause and diagnosis of, and effective treatments for, long Covid could help those with ME. The ME Association has requested that clinical trials for long Covid treatments include a group with ME. What has been learned about the management of ME can help many people with long Covid.
Harlan Krumholz, a cardiologist at Yale, said:
“No one wanted the pandemic, but sometimes a jolt to the system can create innovation in ways that wouldn’t have occurred otherwise”.
That should be our guiding principle.
Health: Chronic Fatigue Syndrome
Baroness Scott of Needham Market Excerpts(4 years, 4 months ago)
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Lord Kamall (Con)
I understand that NICE wants to publish these guidelines as quickly as possible. It is very aware that there have been two delays: first, to make sure that it took on board the various comments; and secondly, the current delay because of issues raised by some clinician groups. As noble Lords will understand, NICE is independent from the Government. It hopes to progress this issue by having the roundtable, hearing all the different views and seeing if some consensus can be reached before the guidelines are published.
Baroness Scott of Needham Market (LD)
Does the Minister accept that the prevailing view in some quarters that ME is a psychological disease is causing untold harm, including to children and young people, who are being forced to accept treatments which are damaging to them, and to their parents, who are sometimes accused of abuse? Taking time to achieve consensus is one thing, but the Minister should be aware that there is a huge cost to this.
Lord Kamall (Con)
It is always important to recognise the unintended consequences and the costs of any delay. I can understand the frustration of many who have ME/CFS at the delay to the publication of the guidelines. It is important that we try to get as much consensus as possible. If noble Lords feel that there are further delays, I hope they will write to and put pressure on me and wider stakeholders, so that we can put pressure on NICE, but it is important that we try to achieve as much consensus as possible.
Social Care and the Role of Carers
Baroness Scott of Needham Market Excerpts(4 years, 7 months ago)
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Baroness Scott of Needham Market (LD) [V}
My Lords, I will focus my remarks on the wonderful work done by voluntary and community groups during the pandemic—as well as the rest of the time—particularly in the area of social care. We owe them an enormous debt of gratitude.
I declare an interest as a trustee of Community Action Suffolk, the infrastructure body for the county. I am also a member of the advisory body of the Institute for Volunteering Research in Norwich. I can recommend that all Peers with an interest in these matters take a look at the research being done there.
Volunteers bring a user-based focus and use their personal commitment, time and skills to make the social care system more resilient. In this way, society becomes more resilient. However, they are complementary to—and not a substitute for—properly resourced public services and professional staff. Volunteers can play a significant role, but government needs to use the existing knowledge and evidence as the basis on which to build effective and sustainable volunteering efforts.
Covid-19 has highlighted much of what we already knew from this evidence. The voluntary sector best supports individuals when it is linked with statutory services and not kept disconnected from them. A key achievement of Community Action Suffolk throughout the pandemic has been to have a seat at the table to ensure that the response of all the voluntary organisations in the county is dovetailed with statutory services. That way, we have been able to link volunteers with shielded individuals, support food banks, assist school testing programmes, and much more.
The Institute for Volunteering Research has shown just how important these infrastructure bodies are. As the demand for their services and the volunteer base grew, their role became more important. But not all areas have these. They are underfunded and not universal.
As people return to work, the sustainability of the volunteer base is in question. Older people are re-evaluating their lives in the same way as are so many of us. Further research by the IVR has shown that attempts by national government since 1948 to direct volunteer efforts centrally have been largely ineffective. Further research by the ESRC has shown how the devolved Administrations have taken a significantly different approach during the pandemic.
Levelling up should not just be about infrastructure in certain geographic areas. There are huge variations in social capital, access to community assets and people’s capacity to help one another. Government departments need to use the available evidence and consider working with funders to create an observation study to find a clearer picture of the disparities which exist and to build a response to them.
Health Protection (Coronavirus, International Travel) (England) (Amendment) (No. 7) Regulations 2021
Baroness Scott of Needham Market Excerpts(4 years, 10 months ago)
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Baroness Scott of Needham Market (LD) [V]
My Lords, the noble Baroness, Lady Thornton, has already mentioned the Joint Committee on Statutory Instruments. I have served on that committee for about two years now. It is one of the less well-known workhorses of the parliamentary scrutiny system. It is very technical in nature and staffed by a very effective and thorough legal team. It is always a busy committee but recent years have been particularly active, with the continued volume of EU exit SIs and those, such as the measure today, relating to the pandemic. When you strip away all the legal technicalities, at root the committee is concerned to see that the law is correctly applied and that agreed parliamentary procedure is adhered to.
This SI and others like it are a very good example of the kind of issues that the committee highlights because it is rather exercised by them. In this case, “variant of concern” and “variant under investigation” are used but with no definition or meaning. The department has said that they do not need to be defined here because they have a commonly understood meaning in the scientific and health community. In practice, that may be true but there is an important point here: the law should be unambiguous and understandable to everyone. There are other examples where the department has included a definition, so it is not even being consistent.
Secondly, without going into the detail of our report there are drafting errors, which the department acknowledges. Three of them have had to be corrected by a subsequent instrument and the fourth, it says, will be. This is not a criticism of the department—drafting at pace is challenging—but it highlights how hard it is to keep track of exactly what Parliament is passing.
The committee has concerns about many trends and will shortly produce a special report which highlights them. The conflation of statute and guidance has exercised the committee and other noble Lords. This, compounded with the practice of government announcements and their attendant publicity, followed by regulation that does not match, is a major concern.
The Deputy Speaker (Lord Russell of Liverpool) (CB)
The noble Lord, Lord Desai, has withdrawn so I call the next speaker: the noble Lord, Lord Naseby.
Covid-19 Vaccines Deployment
Baroness Scott of Needham Market Excerpts(5 years ago)
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Lord Bethell (Con)
As ever, my noble friend is extremely perceptive in his insight. The Moderna vaccine is indeed an interesting one that may well prove to be a useful complement to the Pfizer and AstraZeneca vaccines, which are the bulwarks of our vaccination deployment at the moment. As he probably knows, the MHRA has already sanctioned the use of existing vaccines in some children where there may be a strong clinical need, and under the advice of their clinicians. However, it is our aspiration to spread the vaccines as widely as possible. Unfortunately, children are a vector of infection and it may be that there are strong arguments for vaccinating not just vulnerable children, but perhaps a large number of children. We will look at various different vaccines for that, and Moderna may possibly be a candidate for the kind of A-B double-dose vaccine that I alluded to earlier.
Baroness Scott of Needham Market (LD) [V]
My Lords, as we move towards group six, we are getting into a rather complex situation where vaccination is not determined only by age but by health conditions and their severity. Can the Minister say something about how we will communicate to the public the kind of conditions and the level at which they have them that will lead them to be vaccinated so that people have a clear understanding and GP practices are not inundated by the task of having to give that information out?
Lord Bethell (Con)
The noble Baroness is entirely right. We are entering a different phase of the rollout where definitions are not based so clearly on age and where more choices have to be made. Noble Lords have raised special groups and interests for which they have made a good case for them to be prioritised. We are reaching the moment when that communication will be made more clearly. I cannot say for certain what it will be because I do not yet have the information in my gift. However, I reassure the noble Baroness that, when that moment comes, the communication will be done very clearly and all the arguments that have been made in this Chamber will be listened to.
Health Protection (Coronavirus, Restrictions) (Self-Isolation and Linked Households) (England) Regulations 2020
Baroness Scott of Needham Market Excerpts(5 years, 1 month ago)
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Baroness Scott of Needham Market (LD) [V]
My Lords, there is no doubt that the appearance of this new variant has taken us into a very difficult situation. As welcome as the vaccine is, we have to acknowledge that getting the whole country protected will not be a very quick process. Therefore, the measures that we take, individually and collectively, while we wait to be vaccinated are absolutely key.
I want to ask the Minister two questions. First, what work is going on to reassess the protocols and procedures that have been developed for workplaces, schools, places of worship and so on to ensure that systems which were fit for purpose with the original virus continue to be so with one that is more transmissible?
Secondly, on an individual basis, I acknowledge that this is anecdotal but I am hearing a lot of stories about people who contract Covid and say that they have no idea how they caught it because they have been really careful and have followed all the guidance and procedures. Is any reassessment going on of the sorts of behaviours that many of us have fallen into the habit of adopting? Are those preventive measures still fit for purpose or should we be protecting ourselves and others differently?
Finally, on a different matter, there is a huge role to be played in a vaccine rollout by volunteers, not just as injectors but in a whole range of ways. My plea to the Government is not to rely on a centralised system of the kind we saw last year, as that just does not work. There is a lot of good will but it needs to be harnessed and used locally, because that is where it can be used to best effect.
Covid-19
Baroness Scott of Needham Market Excerpts(5 years, 5 months ago)
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Baroness Scott of Needham Market (LD) [V]
Is the noble Lord aware of the situation at Banham Poultry in Norfolk where, as of this morning, 104 people at the factory have tested positive and the public health director has reported that only 52% of contacts have been traced? This has led to the local authority bringing in a company to see if it can improve that figure. What conclusions are being reached as to why, in this instance, there is such a low rate of positive contact with people who may be affected?
Lord Bethell (Con)
The truthful answer to the noble Baroness is that I know that there is an outbreak at Banham but I do not know the operational details of the kind she describes. What I can say is that the system is deliberately constructed so that a local director of public health, or the local authority, has the option, if they think it has local relevance, to bring in the resources that are needed for any particular arrangement. If, for some reason, a local director of public health, or the local infection control team, sees an opportunity for bringing in outside resources—a charity, a company, a technology—that is entirely appropriate and welcome. That is exactly the kind of local intelligence and expertise that we depend on to be effective. A central track and trace operation cannot do everything; that point that has been made in this Chamber hundreds of times and is a point that we entirely embrace. I am, in fact, hugely encouraged by the anecdote the noble Baroness tells.