Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 17 March (HL5423), what plans they have to treat or cure the estimated 1.8 million people suffering from long Covid in the period to March 2024 and those additional people who have contracted the disease since that date.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England has invested £314 million since the start of the pandemic to provide care and support for people with long COVID. This includes establishing specialist clinics throughout England to assess adults, children, and young people who are experiencing long-term effects due to COVID-19 infection. A further £86.7 million of funding was included in integrated care board core allocations for 2024/25, and specific regional funding was also allocated for assurance and system support.
To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice and to support people affected by long COVID. Further information on the Clinical Post-COVID Society is available on their website, in an online only format.
Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and the Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 10 March (HL5426), which of the research studies relating to long Covid are still running; and how much they are planning to spend in this financial year to treat or cure the symptoms of long Covid.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. The overall Government investment in long COVID research is over £57 million. Government research funders welcome applications for funding for long COVID research.
Of the research studies identified in the answer for HL5426, four are ongoing and have expected spend in this financial year, namely: STIMULATE-ICP; PHOSP-COVID; Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue; and Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection. The total budget for these studies is over £15 million, but spend in this financial year is not yet confirmed, as it depends on the progress of the studies.
No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID. The UK has a strong track record of developing and evaluating new treatments for COVID-19 through randomised control trials. In November 2020, the NIHR and UKRI launched their first call for research proposals on long COVID and subsequently funded the treatments for long COVID. In 2021, the NIHR funded the STIMULATE-ICP study as the largest trial for long COVID treatments at the time. This study is still ongoing, and emerging findings will be shared with the National Institute for Health and Care Excellence. The NIHR Innovation Observatory has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome, as well as related conditions such as long COVID and fibromyalgia. The horizon scan focused on medicines with a UK licence that are in phase two or three clinical trials, with trial registration dates from 2020 onwards.
Unfortunately, no study globally has identified a cure for long COVID. The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial, which combined exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of progress made by UK-based researchers on finding methods to treat the symptoms of long Covid and to cure patients suffering from long Covid.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. The overall Government investment in long COVID research is over £57 million. Government research funders welcome applications for funding for long COVID research.
Of the research studies identified in the answer for HL5426, four are ongoing and have expected spend in this financial year, namely: STIMULATE-ICP; PHOSP-COVID; Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue; and Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection. The total budget for these studies is over £15 million, but spend in this financial year is not yet confirmed, as it depends on the progress of the studies.
No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID. The UK has a strong track record of developing and evaluating new treatments for COVID-19 through randomised control trials. In November 2020, the NIHR and UKRI launched their first call for research proposals on long COVID and subsequently funded the treatments for long COVID. In 2021, the NIHR funded the STIMULATE-ICP study as the largest trial for long COVID treatments at the time. This study is still ongoing, and emerging findings will be shared with the National Institute for Health and Care Excellence. The NIHR Innovation Observatory has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome, as well as related conditions such as long COVID and fibromyalgia. The horizon scan focused on medicines with a UK licence that are in phase two or three clinical trials, with trial registration dates from 2020 onwards.
Unfortunately, no study globally has identified a cure for long COVID. The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial, which combined exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is their estimate of the level of functional impairment endured by patients suffering from long Covid.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government recognises that long COVID is a complex condition, with a wide range of symptoms, which, in the worst case, can be substantially incapacitating. The term ‘long COVID’ is an umbrella term, coined by patients and widely used to describe a wide range of symptoms or clusters of symptoms, of differing duration and severity, and potentially a number of distinct syndromes. The clinical case definition produced by the National Institute for Health and Care Excellence identifies three phases of post-COVID-19 infection, the latter two of which are commonly described as long COVID, which are as follows:
The most common symptoms of long COVID are extreme tiredness or fatigue, feeling short of breath, problems with your memory and concentration, sometimes referred to as brain fog, heart palpitations, dizziness, joint pain, and muscle aches.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how they are monitoring the prevalence of long Covid in England; what is their estimate of number of people in England currently suffering from long Covid; what is their analysis of how long those people have had long Covid; and at what rate is the prevalence of long Covid increasing or decreasing.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The most recent data from the Winter Coronavirus (COVID-19) Infection Study, a joint study carried out by the Office for National Statistics (ONS) and the UK Health Security Agency, shows that, for the period 6 February 2024 to 7 March 2024, an estimated 1.8 million people, or 3.3% of the population, in private households in England, self-reported experiencing long COVID symptoms more than four weeks after a COVID-19 infection. The following table shows a breakdown of duration:
Duration | Estimate |
4 to 11 weeks | 148,971 |
12 to 25 weeks | 105,946 |
26 to 38 weeks | 28,107 |
39 to 51 weeks | 57,164 |
52 to 77 weeks | 105,962 |
78 to 103 weeks | 116,876 |
104 to 155 weeks | 253,770 |
156 weeks and over | 365,922 |
No estimate has been made of the rate at which prevalence of long COVID is currently increasing or decreasing in England. The ONS does not regularly collect this data.
No estimate has been made of the effect of long COVID on the economy in each year from 2020 to 2024, including the effect with respect to those affected by long COVID of their economic inactivity, the diminution in their quality of life, their lost income, the cost of informal caregiving for them, and their extra healthcare costs.
The most recent data from the infection study shows that for those who self-report long COVID of any duration, in England and Scotland, who are aged between 16 and 64 years old and are not in education are less likely to be employed or self-employed compared with those who have not reported long COVID.
On 18 December 2020, NHS England had put in place 69 dedicated clinics across the country. As of 1 April 2024, there were over 90 adult post-COVID services across England along with an additional 10 children and young people’s hubs.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is their estimate of the effect of long Covid on the economy in each year from 2020 to 2024, including the effect with respect to those affected by long Covid of (1) their economic inactivity, (2) the diminution in their quality of life, (3) their lost income, (4) the cost of informal caregiving for them, and (5) their extra healthcare costs.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The most recent data from the Winter Coronavirus (COVID-19) Infection Study, a joint study carried out by the Office for National Statistics (ONS) and the UK Health Security Agency, shows that, for the period 6 February 2024 to 7 March 2024, an estimated 1.8 million people, or 3.3% of the population, in private households in England, self-reported experiencing long COVID symptoms more than four weeks after a COVID-19 infection. The following table shows a breakdown of duration:
Duration | Estimate |
4 to 11 weeks | 148,971 |
12 to 25 weeks | 105,946 |
26 to 38 weeks | 28,107 |
39 to 51 weeks | 57,164 |
52 to 77 weeks | 105,962 |
78 to 103 weeks | 116,876 |
104 to 155 weeks | 253,770 |
156 weeks and over | 365,922 |
No estimate has been made of the rate at which prevalence of long COVID is currently increasing or decreasing in England. The ONS does not regularly collect this data.
No estimate has been made of the effect of long COVID on the economy in each year from 2020 to 2024, including the effect with respect to those affected by long COVID of their economic inactivity, the diminution in their quality of life, their lost income, the cost of informal caregiving for them, and their extra healthcare costs.
The most recent data from the infection study shows that for those who self-report long COVID of any duration, in England and Scotland, who are aged between 16 and 64 years old and are not in education are less likely to be employed or self-employed compared with those who have not reported long COVID.
On 18 December 2020, NHS England had put in place 69 dedicated clinics across the country. As of 1 April 2024, there were over 90 adult post-COVID services across England along with an additional 10 children and young people’s hubs.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how many specialist clinics dedicated to treating long Covid were operating in 2020, and how many are operating now.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The most recent data from the Winter Coronavirus (COVID-19) Infection Study, a joint study carried out by the Office for National Statistics (ONS) and the UK Health Security Agency, shows that, for the period 6 February 2024 to 7 March 2024, an estimated 1.8 million people, or 3.3% of the population, in private households in England, self-reported experiencing long COVID symptoms more than four weeks after a COVID-19 infection. The following table shows a breakdown of duration:
Duration | Estimate |
4 to 11 weeks | 148,971 |
12 to 25 weeks | 105,946 |
26 to 38 weeks | 28,107 |
39 to 51 weeks | 57,164 |
52 to 77 weeks | 105,962 |
78 to 103 weeks | 116,876 |
104 to 155 weeks | 253,770 |
156 weeks and over | 365,922 |
No estimate has been made of the rate at which prevalence of long COVID is currently increasing or decreasing in England. The ONS does not regularly collect this data.
No estimate has been made of the effect of long COVID on the economy in each year from 2020 to 2024, including the effect with respect to those affected by long COVID of their economic inactivity, the diminution in their quality of life, their lost income, the cost of informal caregiving for them, and their extra healthcare costs.
The most recent data from the infection study shows that for those who self-report long COVID of any duration, in England and Scotland, who are aged between 16 and 64 years old and are not in education are less likely to be employed or self-employed compared with those who have not reported long COVID.
On 18 December 2020, NHS England had put in place 69 dedicated clinics across the country. As of 1 April 2024, there were over 90 adult post-COVID services across England along with an additional 10 children and young people’s hubs.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what research they are funding, and at what cost, into treatment options for long Covid, including clinical trials.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. This investment spans both infrastructure supported projects and programme awards.
The total funding for the research studies, which include at least one element on treatments, is over £16.2 million. We have provided the overall figures of investment into the relevant studies, although not all funding would have been directly spent on treatments or clinical trials, which are as follows:
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to NHS Digital’s General Practice Data for Planning and Research data collection, what plans they have (1) to write individually to every affected patient fully explaining the proposed data acquisition and its benefits and risks, (2) to include an easily understandable summary of the Data Processing Impact Assessment in any such letter, and (3) to provide both paper and digital methods for patients to easily opt out if they so choose.
Answered by Lord Bethell
Privacy information can be communicated to patients through a range of different techniques. We have written a letter to all general practitioner (GP) practices in England who are best placed to inform patients about the data they routinely share. A copy of the letter is attached.
We are not ruling out writing to patients but there are concerns that this may not be the most effective way to communicate on this topic. Discussions are ongoing concerning writing to patients, but initially NHS Digital have been asked to work closely with the GP profession to ensure practices are supported in informing patients, whilst acknowledging the need to protect GP practices from additional burden
Patients can register a National Data Opt Out via post, phone or email, or register a Type 1 Opt Out by contacting their GP and we are looking at ways to make this process easier for patients and GPs.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to the NHS Digital project to collect General Practice data for planning and research in England, whether they plan to place documents relating to the (1) transparency, (2) accountability, and (3) risks of the project in the Library of the House; and if so, when.
Answered by Lord Bethell
We have no plans to do so. NHS Digital has published a transparency notice and privacy notice for the programme, which is available in an online only format.
The Data Provision Notice for the data collection outlines that NHS Digital have responsibility and accountability for the dissemination of data as the Data Controller under the United Kingdom General Data Protection Regulations. Following the deferral of the implementation of the programme for further engagement with stakeholders, the Data Provision Notice has been withdrawn to reflect these discussions.
The Data Protection Impact Assessment for the data collection which details the privacy related risks and mitigations will also be published online following its final assurance processes.