As a statutory public inquiry, the Chair – Baroness Hallett – has the power to compel the production of documents and to call witnesses to give evidence on oath. It is a hugely important task – the pandemic’s management had an immeasurable impact on the UK.
The impact on the care sector has been catastrophic. Far too many lives were lost. Too many died alone. Relationships were destroyed. Untold suffering was caused to people living in care, their families and friends. It is imperative that lessons are learnt, and questions answered about the most sustained attack on the rights of people in care we have ever seen. People living and working in care deserve answers.
‘Mum had Alzheimer’s and for the last 10 months of her life I was unable to be there for her, which caused immeasurable anguish for us both. I shall never get over it.’ Jane, whose mother lived in care.
Examining the care sector
To take on this immense task, the Inquiry has been broken down into modules. So far, three modules are in full swing: Resilience and preparedness; Core UK decision-making and political governance; and the Impact of Covid-19 pandemic on healthcare systems in the four nations of the UK. The care sector will be examined as module 6, with preliminary hearings planned for ‘early 2024’.
We have been urging the Chair of the Inquiry to bring forward the care module, sadly without success. Whilst not wanting to downplay the importance of other modules, such as on vaccines and procurement (modules 4 and 5), we believe examining the care sector is much more urgent.
Covid-19 is still impacting on people’s lives in care settings, particularly during outbreaks. Lessons must be urgently learnt and implemented. We are concerned that memories will fade, people will move roles and too many more people will have passed away before work even gets started. For bereaved loved ones, it is a long time to wait for closure.
We have been granted Core Participant Status (alongside John’s Campaign and the Patients Association) for two of the modules so far and are in the process of applying for the care sector module (with the kind support of law firm Leigh Day). We’ll be working to ensure the voices of people needing care and support and their families are heard. A major flaw in the pandemic response was the lack of voice or representation for people needing care and support and their families when decisions were being made. This must now be rectified as lessons are learnt and implemented for future decision-making.
‘Little regard appears to have been taken regarding the views of individuals, particularly people in care homes not having contact with loved ones in a time of great need. Full understanding of personal relationships and contact must be of paramount importance, which was not the case.’ John, whose wife lived in care.
What we’ve heard so far
Evidence sessions on political decision-making took place during November and December with political leaders such as Boris Johnson and Matt Hancock taking the witness chair. The sessions were a very difficult watch for families who have already been through so much, and no doubt for staff too.
The suffering caused to people living in care and their loved ones by Government’s mismanagement of the pandemic cannot be overstated. We heard this distress and trauma daily via our helpline and support services. Watching our political leaders try to defend this mismanagement will only have added to the anger and pain felt by many.
The Inquiry explored in detail the (then) Prime Minister’s reported views on older people during the pandemic: that they ‘had a good innings’, ‘will die anyway’ and should ‘accept their fate’. Despicable views from anyone, but to come from the very top of Government is astonishing. Johnson brushing these off in the session as ‘speaking bluntly and in an unpolished way’ has caused yet more upset. The Inquiry also covered the alarming absence of sufficient planning for people with learning disabilities and autistic people.
Partygate
The parties and rule-breaking at Downing Street were defended by the former PM as ‘hard-working civil servants who thought that they were following the rules’. This has been particularly distressing for people who watched the deterioration of a loved one from behind a window, or people dying alone in hospitals and care homes, whilst the people making those rules were breaking them.
It was undoubtedly distressing for people working in care too, given the sacrifices made during the pandemic to keep people safe, in extremely challenging working environments and as colleagues and those accessing care lost their lives. Johnson referred to the ‘flexibility’ written into the guidance, but perhaps that only applied in Downing Street? The sessions have exposed the former Prime Minister’s lack of understanding of the devastating harm and irreparable damage caused to people in care and their families.
‘The scarring of having to look at someone you love through a window, unable to communicate in any way, to calm them down when obviously distressed, is something that will stay with many of us forever. The continuous fight, with no voices heard from those living, working and supporting, yet collectively we were all making a noise.’ Kate, whose mum lived in care.
The ‘protective ring’
The former Secretary of State for Health and Social Care, Matt Hancock, also gave evidence on political decision-making. He finally admitted what the sector has known all along – that there wasn’t a ‘protective ring’ around care homes. Given the neglect of the sector, the claim was always nonsense.
Take the lack of PPE or the slow roll out of testing, which wasn’t systematically available to the care sector until the autumn of 2020 and some wider community settings until February 2021.
Couple this with Government policies to ‘protect the NHS’ which put the lives of residents and care staff at far greater risk, particularly the discharge of patients from hospital without testing. Under the scrutiny of the Inquiry, the former Secretary of State was finally forced to admit that the processes he put in place around the care sector did not form a ring, or an ‘unbroken circle’.
What lessons we want to see
Given the pandemic’s devastating impact on the care sector, there are so many lessons that must be learnt.
To name just a few:
- A focus on people – policies must focus on people most at risk and in need, not on institutions.
- Care and support must be seen as a vital, frontline service – care and support must never again be an afterthought and care staff must be given the vital tools and support to protect people most at risk.
- Valuing lives – never again should the lives of older and disabled people be devalued, their voices must be heard and the rights of all people must be protected.
- Holistic health and wellbeing – the response to a health emergency must ensure a better balance between protecting from the health threat and protecting wider health and wellbeing, to ensure fundamental rights are respected.
- Recognise the vital support of family/friends – the practical, mental and emotional support provided by relatives and friends must be protected in law; people should have the right to a Care Supporter.
- Oversight is critical – systems must be in place to safeguard rights in care, we need a robust regulator to act as the voice of people using care services and a reliable system of central Government oversight of the sector and its vulnerabilities.
- Empower people to speak out – there must be support for residents, their relatives/friends and staff to raise concerns, such as a central, independent complaints procedure.
These lessons must be learnt swiftly. It is already four years since the pandemic struck and still, we have not examined the impact on the care sector. This must now happen at pace with lessons being urgently implemented.
Echoing the disappointment felt in response to the Inquiry’s active modules, The National Care Forum said, ‘Module 2 was all about decision making, yet it is clear from the evidence presented that the critical impact of choices made by the core political and administrative decision-makers in the UK Government on social care was not under sufficient scrutiny. ‘At the outset of the module we made our proposition clear: firstly, that social care was overlooked at key decision-making moments; secondly, that social care was misunderstood and viewed solely as care homes for older adults; and thirdly, that social care was disadvantaged, especially in comparison to the NHS, with the focus of decision-making appearing to be to protect NHS hospital capacity. It was hugely frustrating that those appearing before the judge were not examined in relation to these fundamental points. ‘As the focus moves to the care sector in module 6, the Inquiry’s scope must widen to consider the impact on the whole of the care sector.’ The care sector module will finally get underway this year. This is when we will hear from political leaders about their policies and decision-making relating specifically to care. But it will also be a chance to hear voices from within the sector. This must include hearing from people directly impacted by care policies and decisions – people relying on care services, their families and friends and people working in care. These voices were not heard during the pandemic but must be listened to now. This is vital if we are to understand what happened, the impact it had on lives and to ensure the suffering caused never happens again. You can feed in your thoughts via the Inquiry’s Every Story Matters platform. Visit https://covid19.public-inquiry.uk/every-story-matters What are your thoughts on the progress of the Inquiry? Leave a comment on this article or join the conversation. Helen Wildbore is Director at Care Rights UK. Email: [email protected]Next steps