Session 4: Summary 
Impact on the population (1) Disability and social care

Alia Butt
Executive member, Keep Our NHS Public, Chair NHS Staff Voices

 

The government states they have done all they can to keep us safe and healthy. It has made clear its priorities by spending billions of pounds on failing contracts, placed with private companies. Now, they celebrate the excellent vaccine roll out as their own victory. Many of us however in the NHS and the general public have a different view. We know this has been due to the hard work of NHS staff.

 

Deaths in the UK from Covid-19 now exceed 150,000 according to the ONS. Tonight we ask - was the scale of this tragic loss of life avoidable?  Why has the impact on disabled people and those with social care needs been so devastating?

 

Michael Mansfield QC
Chair of the Panel

Michael Mansfield reaffirmed his statement that a properly constituted Public Inquiry which 

requires in-depth detailed requisitions and documents would need much more time. 

 

Meanwhile, in this inquiry we are attempting to ferret out answers to questions that are being posed while we are in the middle of a pandemic which is going to be with us for some time. 

 

Witness I: Ellen Clifford
Witness statement


Ellen Clifford is a member of the national steering group of Disabled People Against Cuts (DPAC) since October 2011. She is author of The War on Disabled People: Capitalism, Welfare and The Making of a Human Catastrophe published in June 2020 by Zed Books, now an imprint of Bloomsbury. She has worked in the disability sector for more than 20 years, largely within Deaf and Disabled People’s user-led organisations but also specialising in service user involvement. She is a mental health service user. 

 

Ellen Clifford began her evidence by offering different definitions of disability and spoke about the many ways in which disabled people had been disproportionately affected by the pandemic. 

 

Ellen Clifford explained both the legal and social models of disability, stating that the disability movement favours the social model, which focuses on external barriers which disabled people face, as a result of the way society is structured and organised, and on the way that disabled people experience socio-economic oppression in the ways that they are excluded from society.

 

Why disabled people have been disproportionately affected

Disabled people are disproportionately represented among Covid-related deaths. According to the Office for National Statistics from January until November 2020, 59.5% of Covid-related deaths were of disabled people. 

Ellen Clifford told the Inquiry there are number of reasons for this:

 

  • Unequal access to health care, which was an issue prior to the pandemic.

  • The use of the clinical frailty score and overzealous limiting access to intensive care.

  • Unlawful use of Do Not Resuscitate Cardiopulmonary Resuscitation Orders on disabled people's notes.

  • Residency in group homes and supported living settings, in particular older disabled people. 

  • Lack of adequate PPE in the early days.

  • Discharge of patients with Covid into care homes and settings who had been untested - in March and April of 2020.

  • Greater difficulties with social distancing for some disabled people.

  • High measures of deprivation: disabled people are three times more likely to live in severe material deprivation than non-disabled people. The Government failed to  apply the £20 uplift applied to Universal Credit to those on legacy benefits. Three quarters of the 2.2m people still on legacy benefits are disabled people. This is despite increased costs for disabled people under lockdown. DPAC calls for this uplift to be made now. 

  • There had been no safety guidance for disabled people with carers coming in and out of their homes. 

  • Disabled people as employees had often been forced into workplaces and situations which had compromised their lives and put them at risk. 
     

Treatment rationing and hospital passports

  • Ellen Clifford stated that she believed Matt Hancock had withheld the issuing of guidance on the equal right to life for disabled people in order to disguise the difficult conditions in the NHS due to earlier cuts and the fact that it was overwhelmed by the pandemic.  This had forced difficult choices on medical professionals. 

  • NICE had reviewed treatment guidelines after an outcry from disabled people and added ‘at the medical professional’s discretion’ after the clinical frailty score had been calculated. 

  • Personal ‘passports’ were created by disabled people to take into hospital to persuade medical professionals that they contribute to society and therefore deserve life-saving treatment.
     

Sweden

In response to a question from Michael Mansfield, Ellen Clifford stated that the example of Sweden had been much talked about in the press at the beginning of the pandemic, when Sweden had been held up as an example of a country which had not locked down. Anders Tegnell, the Swedish Chief Scientific Advisor had had a meeting with Boris Johnson during the Summer 2020 which appeared to affect Johnson’s judgement. In fact Sweden had later held its own inquiry into the high number of deaths particularly in care homes, and had admitted that policy mistakes had been made. Little had been heard in the UK press about these findings. 
 

Vaccines

Finally, Ellen Clifford made the point in relation to vaccines: that while disabled people wanted to be vaccinated, there were problems of access and also distrust in the Government in the way disabled people had been treated since 2010. She stated that locally distrust of government messages was more widespread among sections of the community where she lived in South East London leading, for example, to low compliance with mask wearing.

Additional information

Draft extract from Ellen Clifford's book The War on Disabled People: Capitalism, Welfare and The Making of a Human Catastrophe
Deaths of People's with Learning Disabilities from Covid,
University of Bristol
Independent Living for the Future Reclaiming our Futures Alliance


Witness 2: Martin McKee
Witness statement

 

Martin McKee is a physician trained in internal medicine and public health, Professor of European Public Health at the London School of Hygiene and Tropical Medicine and Medical Director there. He is Research Director of the European Observatory on Health Systems and Policies and a member Independent SAGE.

 

Professor McKee answered a wide range of questions including on the economic effects of the pandemic, current changes to the NHS, the issue of the relatively high rate of excess deaths in the UK, Long Covid, and what policy change is needed for the future. 


The Economy

  • Worldwide, there's been a contraction of the global economy by about 3.3%, which is much greater than was experienced in 2008 which was about 0.1%.

  • The difference now is that governments have intervened on a massive scale. Following the 2010 election after the financial crisis of 2008, the Government reversed the policies of the Brown government and imposed austerity. This time however they have been spending very large amounts of money: in the United Kingdom, and many countries, the Government effectively took over the employment of large numbers of people in the private sector.

  • The IMF is now forecasting a global growth rate of about 5-6% for 2021, falling to about 4% for 2022.

  • Small businesses have lost out very badly, particularly those in the informal economy, and this will have a more serious impact on the economy than for larger companies. 
     

Changes in the NHS

The UK Health Security Agency superseding Public Health England
UKSHA (a change of name from the National Institute for Health Protection) has shifted its role to promoting economic growth, the medical industrial strategy and to supporting the Government’s security agenda while other elements of health promotion will go to NHS England. The concern here is that major political and commercial determinants of health eg the major food and tobacco companies will not be challenged and will be limited to an educational role which is less effective, research shows - if you want to eliminate malaria you ‘go for the mosquitoes’ Professor McKee said. 

Excess deaths and spread of the virus

  • In the first wave the UK had the highest rate of excess deaths because we locked down late. The Prime Minister did not attend 5 Cobra meetings. Models indicate that by locking down a week earlier in the first wave, half the lives lost would have been saved.

  • Countries that did best were ones that implemented restrictions early. When an infection is rising exponentially, time matters. 

  • Once we did go into lockdown, we still had many problems: we lagged behind other countries like Germany in our testing capacity, PPE and intensive care beds.

  • There is also compelling evidence from researchers at Warwick that ‘eat out to help out’ was a major factor in the second wave.

  • In terms of relative death rates, the position is changing because some countries that did well in the first wave have now overtaken us. So now, worldwide we're now about 14th in terms of  excess deaths per million. We’re exceeded in Europe by countries like Bulgaria, Romania, Czech Republic, Serbia, and countries in South America.

  • Care homes: Martin McKee and colleagues published a survey and analysis of people running care homes. His previous work on ‘institutional amplifiers’ on the spread of TB in mines in sub-Saharan Africa and prisons had shown how infections could multiply and spread out into the community (see article for more on this). 

  • People were also moved into the care home already carrying the infection. 

  • Carers were working across multiple homes, risking the spread of the virus. 

  • There was not an understanding at the time of how people’s work in the informal economy had been a major factor in preventing them from isolating. 
     

Long Covid

  • There is currently an attempt to bring together data Europe-wide on Long Covid including Kamlesh Khunti from Leicester University, Tim Spector from the Zoe App project, and doctors monitoring their own illness. 

  • There are a multiplicity of factors which it makes very complicated. Covid-19 latches onto a receptor that is widely distributed throughout the body, and has a direct impact on many cells in the gastrointestinal tract, the pancreas, the lungs and cardiovascular system. It leads to increased blood clotting, but also a hyper-inflammatory response which does damage in its own right.

  • There are other mechanisms that we’re less clear about: a combination of symptoms that look a little bit like some of the post-viral syndromes been recognised in the past; but with clear biological findings - lung scarring or damage to the heart, kidneys or elsewhere.

The future

  • Immediately, we should have a policy of maximum suppression, replicating what was done in Australia, New Zealand, Taiwan, and other  countries where they have really tried with success to get the rates down. 

  • Services need to be provided for people with Long Covid

  • The impact on education and employment need to be tackled.

  • Planning and preparation for the next pandemic needs to be set in place. Finland and Norway have done very well in the pandemic. Both countries have had very proactive public health systems.

  • There has been a crisis of governance - a lack of parliamentary accountability, lack of scrutiny, the erosion of judicial review for example.

  • The care system:  the care system is meant to care for people, to support and nourish and encourage and give them a reason for living, said Professor McKee, but if you look at the companies owning many of these, the facilities have been sold off to property companies.’ In the modern economy that we live in, prisons and care homes, and immigrant detention centres and so on are a means of monetising the storage of human beings.’ So they have a different set of objectives: they are ‘essentially financial vehicles, which happen to have people in them’. And you see the same companies are running the detention centers, the prisons, care homes and so on.

 

For further discussion of broader societal issues see transcript, Martin McKee’s statement and articles.

Additional articles

In the wake of Long Covid WHO and European Health Observatory on Health Systems and Policy
'If the world fails to protect the economy, COVID-19 will damage health not just now but also in the future' Nature medicine May 2020

'Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?' Journal of Long Term Care Nov 2020
Magnitude, demographics and dynamics of the effect of the first wave of the COVID-19 pandemic on all-cause mortality in 21 industrialized countries Nature medicine Dec 2020


Witness 3: Clare Phillips

Witness statement

Clare Phillips is an Operations Manager in Supported Living Services for adults with learning disabilities, working in the charitable sector

 

Clare Phillips gave detailed evidence about problems faced by her service during the pandemic due to lack of Government guidance and PPE for  people with learning disabilties living in their own homes with support. 

 

Supported living and the pandemic

  • There is an assumption that disabled people are supported within care homes but many people with learning and other disabilities are supported in the community in their own flat or shared accommodation. So people supporting people with learning disabilities will go into the homes of people within such accommodation. 

  • Guidance that eventually came out from the Government was directed at care homes rather than at supported living which is different, though has to similarly keep clients and workers safe, governed by the CQC.

  • Initially PPE was not available to supported living services, neither via the NHS nor the care home routes. The service had had to improvise and had to rely on donations from restaurants, catering firms, construction. 

  • Clare Phillips’ service had spent many thousands of pounds on PPE at the outset. It can now access it via the NHS portal, but only very recently. 

  • Government guidance was difficult to understand, changed frequently, often arriving at the end of the day, and had to be interpreted for supported living as opposed to care homes.  

  • Sudden changes to PPE for example are requested without consultation either with providers or people with learning disabilities.

 

Hospital passports

Clare Phillips told the Inquiry that:
 

  • Everybody with a learning disability supported by their service already had a hospital passport which is an up-to-date record of all the essential information about an individual:  their diagnosis, health needs, how that person communicates, next of kin details, important things around eating and drinking, what support the person needs. 

  • Sometimes people with profound and multiple learning disabilities are not able to advocate for themselves in a hospital environment. The concern is that even prior to Covid, people with learning disabilities were not getting the right kind of care. Even with a hospital passport and all the information about somebody’s medication, that might be lost or mislaid - things don't get handed over to the right people. 

  • Clare Phlllips’ service worked with some Local Authority teams to include a statement about the human rights of people with learning disabilities, and that they should be assessed in the same way as everyone else; and that the clinical frailty scale should not be applied just because a person has a learning disability. 

  • Many people they support would normally have someone who knows them well - a support worker or someone else going with them to hospital. That could not happen at the height of the pandemic. The service is making a case that this is really important to each person’s wellbeing - that someone is there who knows the person well. Otherwise it is very frightening for the people they support, and for staff. The hospital passport went with the person into the ambulance. So it was crucial.

  • These measures had made a difference to those individuals that needed to go to hospital, Covid or non-Covid related.

 

Response to Boris Johnson who had said that care homes ’didn't really follow the procedures in the way they could have.’

  • Clare Phillips told the Inquiry that she had been incredibly angry. They had been doing the best they could do ‘without adequate PPE, without guidance that made sense, we had been basically left to get on with it’. Her service had put into practice extra measures that had gone way beyond government guidance.

  • She believed that a crucial factor, in mitigating the spread of Covid in adults with learning disabilities in supported living settings, has been a move away from large residential services to small community homes. Many supported living services have very elderly service users, some with many health needs, including dementia.

  • This differs from large elderly care settings. As an example, an average supported living service may only have 6 service users. This has made it easier to ensure high levels of infection control, and keep to small cohorts of staff in each service.

 

Vaccinations

Clare Phillips told the Inquiry that although her service had been able to offer vaccination to support staff, vaccination for people with learning difficulties and Downs Syndrome has been difficult to access, despite evidence that people with learning difficulties are six times more likely to die from Covid.. The assumption that they are the same as ‘care homes’ has been a challenge, as some GPs have said patients with learning difficulties were left off their lists, because it was assumed that as a ‘care home’, we [the staff[ would be vaccinating people.  

 


Witness 4: Rachel Clarke
Witness statement


Rachel Clarke is a specialty doctor in Palliative Medicine, who works in a hospice but also in her local hospital during the pandemic. She is an author, her latest book Breathtaking, describes the first few months of the pandemic.
 

 

The PPE situation

Rachel Clark told the Inquiry that:
 

  • Hospices were classed as care homes with the same very small initial supply of PPE - a box containing a roll of plastic aprons, several hundred pairs of gloves and 300 fluid resistant surgical masks.

  • Her hospice had been using around 150 masks a day, so they had a two day supply of masks. This was an issue with all hospices.

  • A directive had been issued from NHS England saying that all staff who were patient-facing should wear fluid resistant surgical masks. This potentially meant that the hospice would have to close and this would mean discharging very sick and dying patients, sending them to A&E. 

  • They had called the 24/7 hotline, as promoted by Matt Hancock, and to the Department of Health. There was no answer, there was no response to emails. The hotline which had been touted as a way of addressing all the PPE problems that people were talking about was in reality a ‘nonsense’. 

  • Finally Rachel Clarke had managed to contact a charity who had sourced supplies from building contractors.

  • It was a ‘complete dereliction of duty’ by the Government.  There was no concern or responsibility for these very very vulnerable patients who were dying, and who were facing eviction from our hospice through lack of PPE.


 

The palliative care crisis during the pandemic

Rachel Clarke told the Inquiry that:

  • In palliative medicine they had absolutely done the best they could, redeploying staff to where need was greatest. 

  • The NHS is underfunded, with not enough intensive care beds, or intensive care staff  - this was a very vulnerable position at the beginning of the pandemic but that was even more true with palliative care services. The brutal truth is: ‘in Britain palliative care services are a Cinderella service’. 

  • The public are often unaware that the vast majority of palliative care services are not funded by the Government or the NHS, but are funded by charitable donations to independent hospices who only receive perhaps a third or even a quarter of their funding from government. 

  • Palliative care needs to be funded in a more meaningful way. The NHS is meant to be cradle to grave but the grave bit is sorely, sorely neglected.

  • There are too few palliative care specialists and beds to meet the needs of an ageing population and to allow people to die in a dignified manner of their choosing. 

  • The extreme focus on Covid patients during the first wave, plus the government message of “protect the NHS” meant patients with other illnesses/needs (eg terminal illnesses requiring palliative care, or symptoms of cancer requiring urgent diagnosis and initiation of treatment) did not always have those needs addressed adequately.

  • Patients with metastatic cancer or other terminal diagnoses felt as though they were “second class” patients, causing great distress (an extract from Rachel Clarke’s book with the testimony of cancer patients’ was shared with the Panel).

  • In her opinion they were right to feel distressed. The public narrative and reconfiguration of hospitals focused almost entirely on patients with Covid in the early days. Other patients felt ‘scared and abandoned and left to fend for themselves. We started seeing very ‘late’ diagnoses of cancer appearing in the summer of 2020 onwards – patients whose scans had been cancelled or who were too scared to present to a hospital, and who, hence, received their diagnosis when it was too late to attempt curative treatment.’ 
     

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