Written evidence submitted by Carers Trust (CLL0061)

Summary

The key lessons that need to be taken from the Coronavirus crisis are:

• Many unpaid carers have borne the brunt of the lack of funding for social care– both during the Coronavirus crisis and before.
• Unpaid carers were not being supported before the Coronavirus crisis and have provided even more care during the pandemic with less support.
• Unpaid carers need support for their health and wellbeing.
• Social care funding is in crisis.
• Social care needs significant immediate investment.
• The government must urgently develop plans for substantial and sustainable long-term funding reform for social care.
• Social care needs a workforce plan.
• Lockdown impacted on unpaid carers limiting their ability to get support for their own health and wellbeing, and in some cases limiting their access to essentials like food.
• The Coronavirus crisis has exposed the health inequalities faced by many in the ethnic minority population, often linked to socio-economic factors.
• Unpaid carers should be on the priority list for the vaccine.
• Unpaid carers should be given ‘key worker’ status when the government finalises the vaccine priority list.

Full response

The Coronavirus crisis has had an unequal impact on communities. However, the Coronavirus has not caused these inequalities. The Coronavirus crisis has exposed many of the inequalities that have existed long before the pandemic. These include the funding crisis in adult social care, the massive impact this has had on unpaid carers, the lack of support available to young carers, the lack of services for disabled children and their parent and sibling carers, and the lack of investment in the social care workforce.

One of the most important lessons we need to gain from the Coronavirus crisis is that social care needs funding and the social care system must provide support for people with care and support needs and their unpaid carers.

Social care funding is in crisis and it is clear social care does not have the necessary funding

The Coronavirus crisis has exacerbated and highlighted the pre-existing social care funding crisis. The funding crisis means that local authorities are unable to provide the services that people need and consequently, unpaid carers and people with care needs are going without the care and support they require. The latest ADASS survey[1] revealed that:

• Planned savings for 2020/21 were £608m, equating to 3.9% of net adult social care budgets for 2020/21.

• Nearly three-quarters of councils (69%) indicated that over 60% of their planned savings would be at risk in 2020/21.
• For 2021/22, just over half of Directors (54%) indicated that up to 60% of savings may be at risk.
• For 2021/22, 76% of Directors have either partial confidence or no confidence that their budgets will be sufficient to meet all of their statutory duties, not a single Director indicated that they were fully confident.

There needs to be an immediate injection of investment to resolve some of the short-term challenges that social care faces exacerbated by the pandemic – as well as a commitment to resolve the longer-term funding crisis.

One lesson that should be taken from the Coronavirus crisis is that social care must work for older people, working age people with support needs and the 5.5 million unpaid carers across England. Unpaid carers are being negatively impacted by the current funding shortfall in social care in multiple ways.

• Unpaid carers are providing more and more care because of the shortfall of good quality social care.
• When support for unpaid carers is made available, it is often a one-off payment which does not consider the individual needs of the unpaid carer.
• Local carer organisations who provide regulated care such as domiciliary care or respite care have told us that contracts they hold are being reduced in value putting that service at risk and causing uncertainty for both the organisation and the unpaid carers they support.
• Unpaid carers are not getting the breaks they need from their caring role leading many to be near or at actual crisis point.

Before the crisis, in 2018, the NAO[2] found that unpaid carers provide the majority of care and support to millions of people with care and support needs, who could not manage without them. Bearing in mind demographic changes, unpaid carers’ contribution and centrality to health and social care will only grow in the coming years. During the Coronavirus crisis, unpaid carers provide more care than ever.

ADASS’ Autumn Survey report[3] showed that the onset of the pandemic has led to an increase in the number of people presenting with adult social care needs to local authorities due to carer breakdown. 64% of Directors also said that the number of individuals presenting local authorities as a result of carer breakdown, sickness or unavailability increased due to Coronavirus. In June 2020 this was 53%.

The impact on the social care sector

It’s clear that the Coronavirus crisis had a deep impact on the social care sector as a whole. The already extremely fragile care market is now even more stretched and if local care markets fail – it will be people with care and support needs and their unpaid carers who will bear the brunt of it.

ADASS highlights that years of council budget cut, combined with the increasing needs of older people and disabled people and their unpaid carers created a “perfect storm”. Councils were concerned about the fragility of local markets as they saw a growing number of providers going out of business or handing back contracts and a workforce shortage of over 120,000.

A County Council Network (CCN) survey has re-enforced how important it is for the government to guarantee sufficient short and long term funding to councils for social care. Their October 2020 survey found[4]:

• Only one in five CCN member councils are ‘confident’ they can deliver a balanced budget next year without ‘dramatic’ reductions to services.
• Over half (56%) said service reductions would impact their efforts to tackle Coronavirus, with 60% stating it will lead to a ‘fundamental reduction’ in frontline services.
• Over half (56%) said they were planning to reduce access to care packages and/or introduce new charges for services ‘moderately or severely’, with 42% implementing the same severity of reductions to personal budgets and mental health services. As a result, almost half (46%) said it would mean fewer people would be able to access council-arranged care packages and 65% said it will lead to more demand on the NHS.

The Coronavirus crisis had an impact on the social care workforce.

A number of Carers Trust Network Partners (local specialist carer support organisations) provide regulated domiciliary care. Carers Trust surveyed Network Partners between April and July 2020. Many Network Partners highlighted challenges around:

• Supporting staff and volunteers with their mental health
• Increase demand for services
• Recruitment
• Loss of staff and the impact of having to furlough staff
• Difficulty accessing PPE and increased costs of purchasing PPE

Evidence from Carers Trust Network Partners echoes larger-scale surveys and research into the wider health social care sector. An IPPR[5] report found that:

• One in two health and care workers across the UK feel their mental health has declined in the last eight weeks.
• 42 per cent of healthcare professions across the UK say the government has not done enough to support their mental health

This re-enforces the need for pay and conditions for the social care workforce to be an integral part of the needed social care reforms.

Interdependence between social care and the NHS

Another key lesson that should be learned from the Coronavirus crisis is the interdependence between the NHS and social care.

The policy of rapid discharge was a clear prioritisation to protect hospital capacity over the capacity of providers of social care. This prioritisation of NHS capacity over social care meant care home, home care providers and unpaid carers were without the support they needed to care for people – both who had suffered from Coronavirus and left hospital or those with long-standing care and support needs.

Impact on unpaid carers

The result of the social care funding crisis, and the levels of unmet needs of people with care and support needs, has led to a situation where unpaid carers are providing the vast majority of care, often without the support they need in their caring role. This situation has been exacerbated by the Coronavirus crisis and many unpaid carers are near breaking point as the respite and services they had previously relied on stopped or were heavily reduced.

Over 2,000 unpaid carers responded to a recent Carers Trust survey[6]. Our report based on that survey, ‘A Few Hours To Call My Own’, found:

• 64% of unpaid carers spend more than 50 hours a week caring
• The 2011 census asked unpaid carers the same question. In 2011, 23% of unpaid carers said that they care for more than 50 hours a week.  
• Two-thirds of unpaid carers have seen the amount of time spent caring increase in the last 6 months (66%).  Of unpaid carers who said that, on average, the time they spent caring has increased per week:
• 25% of carers had an increase of 6 – 10 hours of caring per week care
• 60% of carers had an increase of 10 hours or more per week
• 16% of carers had an increase of more than 40 hours more per week
• Only 12% of unpaid carers said that they receive enough support from the government.

Even before the Coronavirus crisis, unpaid carers were facing difficulty balancing their own health and wellbeing with their caring role. The GP Patient Survey [7] revealed:

• 64% of unpaid carers reported having a long term health condition compared to 52% of people not in a caring role.
• Unpaid carers are more likely than those not in a caring role to report problems with mobility and feeling isolated.
• Unpaid carers are more likely to be taking 5 or more medications regularly – 21% reported being in this position, compared to 18% of those not in a caring role.

Carers UK’s research[8] during the crisis revealed:

• 4 in 5 unpaid carers (81%) are currently providing more care than before lockdown.
• More than three quarters (78%) of unpaid carers reported that the needs of the person they care for have increased recently.
• Most unpaid carers (64%) have not been able to take any breaks at all in the last six months.
• More than half (58%) of unpaid carers have seen their physical health impacted by caring through the pandemic, while 64% said their mental health has worsened

The pressure put on unpaid carers as a result of the lack of available social care before the pandemic was compounded by the impact of the Coronavirus crisis.

Unpaid carers have long provided the vast majority of care in the country, and the crisis has only increased the pressure on unpaid carers – whilst taking away the little support that many relied on.

As the country emerges from the Coronavirus crisis, it’s vital that the needs of unpaid carers are recognised and the support they need is put in place.

Impact on young carers and young adult carers

Carers Trust’s My Future, My Feelings, My Family report[9] surveyed 961 young carers and young adult carers who told us about their experiences during Coronavirus. Some shocking pictures emerged, for example:

• 58% of young carers and 64% of young adult carers felt that the amount of time they spend caring had increased since Coronavirus;
• 11% of young carers and 20% of young adult carers said the amount of time they spend caring per week increased by more than 30 hours;
• 8% of young carers and 15% of young adult carers cared for over 90 hours per week during the pandemic.

Only 3% of young carers and 2% of young adult carers have had a paid care worker provide support at home for the person they care for. 42% of young adult carers were unable to take a break from caring. 40% of young carers and 59% of young adult carers say their mental health is worse. Over 1/4 of young carers and 37% of young adult carers are struggling to get emotional support.

Parent carers and sibling carers in families with disabled children

Like adult social care, children’s social care funding is in crisis. The Coronavirus crisis has brought this into sharp focus with greatly negative impacts on families with disabled children.

Carers Trust are part of the Disabled Children Partnership (DCP). Research for the DCP from 2018 shows that an additional £1.5 billion per year is needed to meet the health and social care needs of disabled children) and their families.[10] The government should provide funding to reverse these shortfalls.

The Coronavirus crisis exacerbated the pressure on parent carers and sibling carers. A DCP survey conducted during the lockdown and responded to by over 4,000 parent carers found:[11]

• Most parent carers (72%) responding to the survey said they are providing a lot more care compared with the amount before lockdown.
• Just over two thirds (68%) said non–disabled siblings were providing a lot more care.
• For those who had previously received short breaks, the majority have seen it stop (76%)
• Half of the parents whose children had been receiving therapies or other extra support have seen this stop

The disproportionate impact on people with protected characteristics

The narrative at the start of this crisis around Coronavirus and the resultant deaths of people “with underlying health conditions” and/or who were over 70 concerned many individuals and organisations. Whilst Coronavirus is more dangerous to those with underlying health conditions and/or are over 70, this may have inhibited the initial response by governments and local authorities, and may have – as an unforeseen consequence – sent a negative message to those individuals and their families about the “value” placed on individuals’ lives.

We know that even before the crisis people from minority ethnic backgrounds faced barriers to accessing health and care services. This is recognised by the Government and Health and Social Care Committee and is true of both access to health and care and health outcomes.[12]

ONS research[13] concluded that ethnic minorities' higher risk of dying from Coronavirus is linked to where individuals live and the jobs they do, rather than their health.

Lockdown and social distancing

Within the context of many unpaid carers both themselves being more vulnerable to the virus and caring for people who are more at risk from the virus, the social distancing and lockdown measures had an even bigger impact on unpaid carers and the people they care for than the general population.

During the first national lockdown, one concern that was highlighted to Carers Trust and Network Partners was access to shopping. Whilst some measures taken by supermarkets and governments helped, access to food was a major challenge for many unpaid carers.  There were cases where unpaid carers and the person they care for have been challenged because either, members of the public of shop staff do not fully understand the nature of some disabilities. For example, some disabled people may display challenging behaviour because they do not fully comprehend the rules around social distancing, or the one-way systems that were implemented by many supermarkets. Carers Trust heard of instances of young carers (carers under the age of 18 and young adult carers (carers aged between 16 and 25) being challenged when shopping because of the perception that a young person in the supermarket is flouting the lockdown rules.

We know that many of the services that unpaid carers rely on – such as respite services or support groups – were severely reduced or stopped during the lockdown. This meant that unpaid carers were providing more care than ever before, with even less support.

Coronavirus Vaccine

Unpaid carers should be on the priority list for the coronavirus vaccine. In particular unpaid carers of people who are clinically extremely vulnerable and those living in care homes should be prioritised for receiving the vaccine. They should be given information, such as any side effects, to allow them to decide if and when to take the vaccine.

We know that scientific evidence is still be collected on the effectiveness of the possible vaccine(s) and whether they are effective when administered to older people, their side-effects, and if they stop transmission of the virus.

Unpaid carers, like health and care workers, are in daily contact with clinically vulnerable individuals. Unpaid carers should be treated in the same way as key workers and given the same priority access to the vaccines which are made available. This is especially important if the vaccines available in the UK help stop transmitting the virus.

There is precedence for this. In May, the government added unpaid carers to the same list as key workers to get priority access to testing.[14] This was in recognition of the fact that unpaid carers are in contact with clinically vulnerable people and in recognition of the increased care they are providing during the crisis. The Scottish Government have also confirmed that unpaid carers will be given priority access to the vaccine.[15]

If the side-effects of the vaccine(s) include becoming poorly, these must be mitigated. If an unpaid carer becomes ill with flu-like symptoms, they may be unable to provide the care they usually do – possibly risking the welfare of the person or people they care for. The government must work closely with local authorities to ensure there are sufficient vaccinated social care workers to provide the necessary respite/replacement care.

Innovation during an emergency

Carers Trust through our Carers Emergency Fund distributed almost £450,000 in three months, helping 1,500 unpaid carers in need of support. Even before the pandemic, we know that carers are more likely to face poverty, and the emergency funds helped struggling carers purchase essential household items they couldn’t otherwise afford.

One common way many unpaid carers used their grant was to purchase a laptop. One of the lessons that should be taken from the Coronavirus crisis is that many people, including many unpaid carers, face digital exclusion. The government and services need to recognise that whilst digital support can and has worked for many people, it does not necessarily work for everyone. Service users must be able to choose how they access their support. The move towards more digital support cannot become the default, and how support is provided should be based on service user choice and preference.

We also know that the Coronavirus crisis enabled many of our Network Partners to quickly innovate. Below is just one example of how one of Network Partners – Caring Together, did this.

Case Study Peterborough multi-agency working

In Peterborough, the local umbrella organisation for the voluntary sector, set up a Coronavirus group distribution list made up of various community groups, community leaders, local charities and representatives from the local authority, particularly their co-ordination hub and also the local National Lottery grants officer.

This distribution list has enabled rapid resolution to issues being faced by vulnerable individuals living in Peterborough, by sharing anonymised requests for help. This channel of communication replaced traditional referral-based approaches between organisations and ensured that resolutions could be sourced quickly.

For example, two parent carers of a severely-disabled child became symptomatic over the weekend and were really worried about providing care to their child because they didn’t have any PPE and weren’t able to leave the house. At 2 pm the request was put out to see if anyone locally had any PPE (gloves, aprons, masks) that could be provided to the family, and by 4 pm the same day we were able to provide the parents with a supply of PPE (thanks in part to the donation of PPE provided by Carers Trust) to provide that peace of mind and enable to care for the child to continue.

For more information, please contact Ramzi Suleiman, Policy and External Affairs Officer

Nov 2020