Coronavirus: Join our campaign for support in social care

We have heard the Government announcing necessary support for the NHS. However, yet again, social care and those who desperately need it, have fallen to the bottom of the pile.

What is the impact of coronavirus on the care system?

The already stretched social care system has been devastated by coronavirus.

Care homes have shut their doors to visitors and many are operating with reduced staff. At the same time, it's estimated that 1.8million unpaid carers are becoming ill or self-isolating.

We have heard from thousands of people affected by dementia since the outbreak of coronavirus about the issues they have experienced with social care. From people who have become 24/7 unpaid carers overnight due to homecare being cancelled, to those not being able to contact loved ones living in care homes.

Based on what we have heard, we are working on the following priorities in this area.

Our campaign priorities

  • Social contact in care homes - Setting out a timetable and process for reintroducing meaningful visits.
  • Testing and protective equipment - Making sure of availability in all care homes.
  • Protecting social care standards - Responding to the Government’s emergency changes to the Care Act.
  • Carers rights - Protecting the rights of paid and unpaid carers and keeping them connected with the people they support living with dementia.
  • Safeguarding - Working with local and national Government to uphold rights around Deprivation of Liberty Safeguards.
  • Training - Advising on how training of additional volunteers and workforce should be implemented, should these groups of people come into contact with people living with dementia.

Social contact in care homes

We have heard from many of our supporters about the devastating impact of not being able to visit loved ones living with dementia in care homes. Many people have noticed significant cognitive decline and deterioration in the dementia symptoms of loved ones since the lockdown began.

Across England, meaningful care home visits have been stopped again due to the latest lockdown. With 70% of care home residents living with some form of dementia, this once again demonstrates the devastating impact of Covid-19 on people living with the condition and their families.

We now fear that there is a real possibility that should the Government not take urgent action, visits could remain stopped until those in JCVI priority 1 groups have had their second vaccination which could be three months away. This would take us to May and make it 14 months since some have had a meaningful visit – held their loved ones hand, hugged, received vital personal care provided by family and friends.

Family visits are not just about residents having that vital contact with their loved ones, those loved ones also provide care which is why both families and care home managers are reporting severe deterioration in the health of residents over the course of the last year. 

The more people who put their name to our open letter to the Secretary of State for Health and Social Care, the more chance we have of care home residents being reunited with their loved ones at the earliest possible opportunity.

Stand up for those worst hit by COVID-19

Stand with us to see those worst hit by the pandemic prioritised in recovery and care, now and indefinitely.

Join our campaign

What has been achieved so far? 

There are more than 400,000 people living in care homes in the UK, more than 70% of which are living with some form of dementia. Many of these people also have other underlying health conditions.

The Government must act to protect them.

We have already had some amazing successes influencing Government, including:

  • Calling on the Government to produce a specific strategy for tackling Covid-19 in the care sector, which they published a week after our letter to Matt Hancock, Secretary of State for Health and Social Care
  • Ensuring the Government committed to releasing daily data on the number of care home deaths, allowing us to understand the true impact of coronavirus on the care home sector
  • Calling on the Government to begin testing on asymptomatic care home residents and staff, which they have now committed to
  • Ensuring that the Government commit to the provision of training on dementia for care staff who may have little experience of caring for people with dementia

What must still be done?

We are so pleased to see the impact our campaigners have had so far, but we will not stop here.

New data from the Office for National Statistics has shown that in March and April 25,000 people living with dementia passed away in England and Wales. This is more than double the number of deaths we’d expect for March and April without the pandemic. People affected by dementia are being unfairly impacted by coronavirus, and the Government must consider them in their action plans for the virus going forward.

Those who are affected by dementia and living in residential care homes have been particularly adversely affected by the fact that for the last year they have been unable to have meaningful visits from loved ones. 

Devastatingly, people affected by dementia aren’t just dying from COVID, they are dying from loneliness that a lack of social contact brings.

The nature of dementia is that if people are not using their skills, they quickly lose them. This includes basic cognitive functions like the ability to recognise family members, as well as communication skills such as remembering words or forming sentences.

As people who are affected by dementia continue to deteriorate, their behaviours get more difficult for care staff to manage. Despite the exceptional care provided in care homes over the last year, support to manage a change in behaviour is limited,  and therefore there has been a significant  increase in the number of people in care homes on anti-psychotic drugs. These can have long term health implications and can double the likelihood of strokes.

At a time when residents’ families cannot assist with care, the work and presence of paid carers is even more important. Due to the pandemic staff absence levels are worryingly high amounting to between 11-40%. Because of this it is really important that the government provides data on the number of staff having their vaccinations and the numbers refusing to receive it.

There is an opportunity to put this right.

We are asking Government to implement:  

  • Set out a clear timetable and process for re-introducing meaningful visits to care homes. 
  • Publish the percentage of care home residents and staff who have received the first and second doses, and how many have refused the vaccine. 
  • Urgently review the use of anti-psychotic medication for people with dementia.
  • An immediate and rapid investigation to better understand why people with dementia are being disproportionately impacted. 
  • Improved communications to people affected by dementia that are clear, consistent and straightforward. 
  • Visits from healthcare professionals are re-introduced to care settings as soon as possible.  

You can read more about the impact of the virus on people affected by dementia, and our calls on Government, in our blog.

Our calls on local Government regarding care quality during the pandemic

We are aware that many local authorities are considering whether and how they adopt the Care Act easements introduced by the Coronavirus Act in England. These easements allow local authorities to temporarily relax certain responsibilities in order to prioritise care during periods of significant pressure, such as the current pandemic.

We want to make sure that those most at risk receive the most protection. Dementia is the second highest pre-existing health condition for people dying of COVID-19 in England and Wales, and many people with dementia will have underlying health conditions which put them at greater risk of contracting the virus.

We want to ensure that local authorities who adopt the easements continue to meet the needs of people with dementia and avoid this crisis leading to an irreversible deterioration in their condition.

You can read more about our calls on local Government adopting Care Act easements.

Read about our other coronavirus campaigns

  • Support in the NHS - campaigning for everyone with dementia to have access to critical care.
  • Support in society - campaigning for everyone with dementia to have access to food and essential services.
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