Helen Wildbore, Director, Care Rights UK
My colleagues running our helpline have worked as advisers on social care for almost 20 years and they have never seen the sector in such a poor state. A perfect storm has brewed to create a national crisis. Over three years of COVID-19 restrictions, staffing shortages which have long been a problem but exacerbated by Brexit and the pandemic and the cost of living have converged to stretch the sector to breaking point.
Services are so stretched; we hear serious concerns about people’s safety and dignity. Callers to our helpline tell us the distress, anxiety, frustration and despair this causes. With care provision so sparse, people have little, if any, choice and can feel trapped in a broken system.
It is a system stacked heavily against people living in care and their families. They are in such a vulnerable position and are too easily dismissed as ‘expecting too much’ or ‘problem relatives’. When people can face visiting bans or an eviction notice for raising too many questions or making a complaint, all too often they are afraid to rock the boat. If the care home simply doesn’t have the staff to improve the situation, people can feel there’s no point in damaging relationships, so they put up with poor care.
Too many have faced these challenges without the vital support of their family carers. Over three years of COVID-19 restrictions showed the devastating harm this causes. Being shut off from the person who knows you best, helps you communicate, might be the only person you would tell if you were in pain, would spot problems and be your voice to resolve them. There is a growing recognition in the sector of the crucial role of relatives and close friends as partners in care. Many care organisations are joining with us to call on Government to bring in a legal right to a Care Supporter across health and care settings.
With Government leaving the sector woefully underfunded, families tell us they feel bereft and helpless. It is a system relying on the goodwill and dedication of an underpaid, under-supported, unvalued workforce. It is unfair to expect care staff to deliver quality services without the training, rewards, qualifications and career development of their NHS colleagues. Every day on our helpline we hear, ‘The care workers are great, and trying their best but…’.
Yet many care homes can and do provide good care. They are an example of how this can be done, with well-supported staff, good leadership and responsiveness to feedback. Many care providers share our frustration and also want the investment and change so desperately needed. We must work together to demand a care system where everyone can access good care. This requires political will and resources but also bold leadership from within the sector to reform services so vital to the country’s wellbeing.
Emily Holzhausen OBE, Director of Policy and Public Affairs, Carers UK
Thinking back 20 years, to 2003, when Care Management Matters started, I realise how far we have come for unpaid carers, and yet what unfinished business still remains two decades on. Including the role and lives of families and close friends who provide unpaid care for their disabled, older or chronically ill people close to them has been important to us and to them. So often, unpaid carers go unrecognised, and yet the value of their support is worth a staggering £162bn a year – or £445 a day – the same as the NHS. Most of us will become unpaid carers at some point in our lives –two in three of us – but many of us are not prepared for that individual journey which can happen at any time, including at very short notice.
In 2003, when CMM first started, the first ever Prime Ministerial National Carers Strategy was already into its fourth year and funding of carers’ breaks and support from central Government to local authorities was around £100m. Today that support through the Better Care Fund is around £327m, but now channelled through Integrated Care Boards and no longer directly to local authorities. Whilst funding might have increased, the backdrop of funding of social care has not risen in line with needs and has experienced real terms cuts for nearly a decade.
It’s hardly surprising therefore, that with an ageing population, more complex care delivered in the community and tighter budgets for social care, we have seen a rise in the level of care that families are providing. In 20 years the amount of significant care provided by families, for example, 50 hours plus per week, has risen by about 50% (995,000 in 2001 to 1.4 million in 2021). This is unsustainable and a false economy in the longer term, for many reasons. As well as not giving disabled and older people the choice about how they wish to be cared for, for families having to provide increasing amounts of care can be devastating. An estimated 600 people a day give up work to care. It also has an impact on health, wellbeing, broader finances and relationships. If Government were to invest more in care this would not just be about increasing support for the social care sector, including the paid workforce, it would be a far bigger investment in families and the economy.
Over the past 20 years, carers’ rights have continued to grow and develop – with the Carers (Equal Opportunities) Act 2004 and then the Care Act 2014 giving parity of esteem with people needing care and support. The legislation over time has learned and developed with carers with increased personalisation, although tight budgets remain a challenge in delivering the range and level of support needed.
In 20 years the idea of unpaid carers juggling work and care has gone from the margins to getting better recognition. Given that around one in three workers in care could be juggling work and unpaid care, this is of fundamental importance. In 2003 unpaid carers’ first workplace rights, unpaid time off for dependents for emergencies, had only recently been in force. Two decades later, we are on the cusp of new employment legislation, with the Carer’s Leave Bill sponsored by Wendy Chamberlain MP, which would give up to one week’s unpaid leave in the workplace. We expect two million working carers to gain new employee rights, something which the care sector will need to get ready for in 2024. Part of our future will be to support the best implementation of this new law through our Employers for Carers forum, with 230 employers covering around 2.3 million employees.
I hope that the next 20 years will see a wholesale transformation in awareness and understanding of the role of unpaid carers, an expansion of tech for good that makes their lives easier and gives people needing care more independence, real and concrete support in the workplace and enough funding for social care to really deliver the vision that so many creative and committed people have in the sector.
Karolina Gerlich, Chief Executive, The Care Workers’ Charity
There have been many changes over the last 20 years, which is to be expected. The social care system has undergone a dramatic transformation.
In 2000, the UK Government had just begun to develop the National Care Standards, which aimed to improve the quality and safety of care services. At that time not many care workers routinely completed clinical tasks such as supporting people with catheter care, stoma care or cancer medication. Today it is common practice. In the following years the Government implemented the Care Act 2014, which improved the rights of care users and introduced more rigorous social care regulations. In addition, the introduction of the Care Quality Commission in 2009 saw an increase in the regulation and inspection of social care services.
Then came many more reforms, most focusing more on the NHS rather than its social care counterparts. This has sadly been repeated with the most recent DHSC Budget update showing that only half of the £500m promised in 2021 towards workforce development and reform will be delivered. When the Government promised ‘at least £500m’ for the social care workforce in 2021, this was nowhere near enough to address the crisis facing the sector in the first place, but it was at least a glimmer of hope and commitment to the workforce.
With the advancement of technology, an ageing population, funding issues, and the rise of companies such as Amazon and Aldi who can offer a more competitive wage, the social care sector has had many obstacles to overcome.
Of course, we can’t give an account of the last 20 years without talking about COVID-19.
If anyone felt the coronavirus’s cold breath on the back of their necks, it was care workers.
No ‘working from home’ options were possible and everything that care workers knew changed. Care workers tearfully spoke on the news, Channel 4 released ‘Help’ which showed some of the horrific circumstances faced by care workers and the public ‘clapped for carers’ (eventually) along with clapping for the NHS.
Whilst the pandemic was a tragedy of global proportions, it also helped to highlight the incredible work that care workers do, day in and day out. The level of resilience and strength we have seen from them, despite all the issues they have faced in the last 20 years, has been astounding. They deserve admiration and support for the skilled and steadfast care that they continue to provide for people who draw on social care.
Care workers have remained the solid foundation of our society. The ones who have during the pandemic spent extra time with those who couldn’t be with their own families. In care homes, in the community, day centres, and in people’s own homes, they march on, continuing to do what they do to support others. They do what is one of the most amazing jobs in the world. It is such a shame that the sector is so badly funded by the Government and so poorly recognised by society.