Our vision is for older people receiving care to have the best possible quality of life, with human rights central to their care.
People who need support should have peace of mind that their care will be delivered by staff who are kind, compassionate, confident and skilled. People should be able to expect that their new home in care will be a welcoming, comfortable and caring environment where they can develop a sense of belonging.
We want to see people needing care being empowered to have control over their lives and receive the support they desire from relatives and friends. Yet, we hear from people every day struggling to navigate the complex care system, facing barriers and having serious problems with their care. We see first-hand how their basic rights are being ignored and how existing legislation fails to protect them. Significant cultural change is needed to shift the power imbalance.
Social care has been neglected and underfunded for decades. Previous governments have failed to prioritise it, leaving it in the shadow of the NHS. Issues with insufficient funding, workforce shortages and declining care quality are widely known, yet inadequately addressed. Our advisers, with over 20 years of experience, have never seen care in such crisis.
Our recommendations centre around upholding the rights of those accessing care, strengthening the operation and regulation of the sector, and supporting a robust workforce. We’re advocating for well-funded safeguarding teams and protected human rights regardless of funding status, with guaranteed access to Care Supporters and care plans. We’re calling for unannounced inspections, integration of complaint investigations into regulatory processes, and for a fairly funded sector, with stronger integrations with healthcare. We're asking for registered care staff with mandatory, specialist training, who are consistently rewarded and progressed through their career.
Creating a fair, just, sustainable social care system which respects people's rights is a legal and moral obligation of the state. It is also necessary for the economic health of the country; we cannot have a strong, resilient NHS without a strong, resilient care system. The economic case is clear; investing in social care would grow the national economy, as well as supporting local economies and communities.
The Government must act decisively and without delay to reform adult social care. The challenges are well known and the solutions clear. Lack of action leaves people and their loved ones vulnerable to a failing system that isn’t protecting their dignity and wellbeing. We urge policymakers to implement change considering each individual who is let down by the current state of care every day.
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Protecting the rights of people accessing care
Power and neglect
We consistently support people to understand their rights, and to have their rights respected within care settings. There is a significant power imbalance skewed towards care providers and away from the people in receipt of care. Every day we support people who are too afraid to raise concerns for fear of reprisals, such as visiting bans or evictions, creating dangerous situations where poor care can fester.
Pressures on the sector have led to an increase in poor care, at its worst leading to neglect. Individuals’ human rights such as the right to wellbeing are often neglected, for example by not being supported to keep their dentures/hearing aids safe, clean and in use, or being dressed in someone else’s clothes. In some instances, the circumstances are bleaker, putting people’s dignity and life at risk, compromising their right to be free from inhuman and degrading treatment and even right to life under the Human Rights Act. This can include lack of support to eat or drink, lack of medical care, being left in soiled clothes or sheets, or withdrawal of fluids at the end of life. We support people to try and raise safeguarding alerts in circumstances like these, but frequently investigations are slow, bureaucratic and don’t involve the person or their chosen representatives.
Because care homes are seen as a service, it can be forgotten that they are also people’s homes. We support people facing unfair evictions for a range of reasons, including ‘revenge evictions’ after complaints have raised about the care. Our research into the experience of those who have reported concerns to the Care Quality Commission (CQC) found that 18% faced eviction as a result and 11% had their access to the person in care reduced by the care provider.
Individuals' rights are frequently overlooked despite legislative requirements to uphold them. Under the Care Act 2014, the local authority must support one’s need to maintain important relationships which support their wellbeing, including moving closer to family. However, we frequently hear from people who local authorities try to move away from family members providing vital support because of funding shortfalls, breaching the Care Act. There are also protection gaps in law, such as under the Human Rights Act, where interpretations of who has a duty to respect rights has left people funding and arranging their own care without direct protection. This is a vital law for older people needing care and should protect everyone equally.
Margot lived in a care home where some staff weren’t supporting her to wear incontinence pads. She was regularly left in urine-soaked clothing, which led to health problems, causing pain. The lack of support to wash led to her attempting and failing to wash herself. We supported her children to raise concerns with the local authority, referring to her right to be free from degrading treatment under the Human Rights Act. The local authority agreed to move Margot, and her new home supported her to stay clean.
Recommendations
The Government must close the human rights protection gap – all health and care providers registered with the regulator must have a direct legal duty to respect rights under the Human Rights Act.
The Government should increase funding and training for safeguarding teams to ensure their investigations are thorough and involve the person at risk and/or their chosen representatives.
The Government and regulator should protect care home residents from unfair evictions by ensuring assessments are carried out before evictions take place, making all evictions subject to appeal (regardless of how the care is arranged/funded), and obligating providers to notify the regulator immediately of a notice to quit.
The Department of Health and Social Care (DHSC) should introduce standard contract terms for all care home residents setting out their rights, including a right to be consulted and to an Equality Impact Assessment when their home is threatened with closure, no matter the status of the owner (public or private). .
Support of loved ones
A consistent theme on our adviceline is relatives and friends being unable to carry out their caring role due to being left out of conversations or decisions about care or visiting bans. Access can be restricted through inappropriate blanket bans due to infection outbreaks or individual restrictions. Too often we hear these decisions are made with little regard for the impact on the person’s wellbeing, or conditions that can be exacerbated by separation, like dementia. CQC’s annual State of Care Report 2024 found that family members and other unpaid carers play an essential role in supporting people with dementia to access services and to receive appropriate care and treatment, but their own needs often appear neglected, or they feel poorly communicated with.
Every day we hear from people who are shut out of care decisions and their loved ones being stripped of the vital support that can only be provided by the people who know you best. In addition, there are significant, undocumented numbers of people living in care without relatives or friends to support or advocate for them.
Jeffrey didn’t want to be living in a care home and therefore showed distress when his loved one visited. When his loved one (and chosen representative) tried to raise concerns with the care home on his behalf, care staff attempted to ban them from visiting, saying that they were ‘upsetting’ Jeffrey and that it was not in his best interests to have contact.
Recommendations
The Government should pass Gloria’s Law (introducing a new legal right to a Care Supporter), so that everyone can have a trusted loved one to be their eyes, ears and voice when needed in all health and care settings.
Local authorities should make formal advocacy more accessible for those who need it, with proactive work undertaken to understand how many people drawing on care who need an advocate don’t have one.
Person-centred care
Due to immense pressures on the sector, we are hearing of an increased lack of personalised care. The increase in institutionalised care means fewer activities in care homes that are chosen by the resident, and that involve leaving the home. As the number of people accessing care has increased and supply hasn’t matched demand, best practice such as community involvement in care has dropped. It can also mean that care delivered is set around the needs of the provider, rather than those living there.
Staff pressure can mean that there isn’t accountability for reviewing care plans or adapting them, and it can be increasingly difficult for representatives to get a copy of the person’s care plan within a care home, even when they have lasting power of attorney for health and welfare. The right for the person and their representatives to see and get a copy of their care plan under the Care Act is only applicable to the local authority’s “care and support plan” - there is no equivalent legal obligation for the care provider’s care plan. This leaves representatives with only guidance to encourage this practice, which can be difficult to enforce.
We increasingly hear from people who haven’t been involved in creating their care plan, especially because of the ‘Discharge to Assess’ process when leaving hospital. This model involves urgent discharges into care settings with minimal information about the person, often without any involvement of them or their chosen representatives. Without this, the care home has no baseline for understanding the resident, meaning they lose out on their individuality. This can then be carried forward as the basis for the care assessment, resulting in people receiving very general care plans that don’t capture their unique needs and preferences.
Last year, Age UK revealed that 2 million older people have unmet social care needs. We hear regularly that needs assessments by local authorities are not thorough enough and don’t consider the bigger picture of promoting the individual’s wellbeing, despite that being the core principle of the Care Act. This often leads to inconsistencies in how people are assessed and to them being placed in an inappropriate setting for their needs. Delivering someone's care in the wrong setting can cause deterioration in the person’s wellbeing and an increase in their care needs, and therefore greater personal expense.
Sally experienced a deterioration in her health, and she was planned to be discharged home from hospital, despite her son who had been caring for her being no longer able to cope. She was moved into supported living instead of a care home, meaning she was often left unattended for long periods without the personal care needed to live with dignity after her health incident.
Recommendations
The Government should legislate to ensure that a copy of the care provider’s care plan is provided after being created or reviewed with the person and their representative (mirroring the obligation in the Care Act for the local authority to provide a copy of the care and support plan).
Strengthening operation and regulation
Regulation
Changes in recent years to the Care Quality Commission’s approach have meant that regulations are about the basis of care, not provision of quality of life. Assessments are made infrequently, providers are often pre-warned allowing poor care to be concealed, and we hear that rarely are residents and their loved ones who have witnessed the poor care spoken to. The introduction of the Single Assessment Framework in 2022 means there are no longer specific regulations for care homes – they are now assessed the same as a hospital, GP surgery or dentist would be. This approach fails to see them as people’s homes or part of the community, a fundamental difference in how care is delivered that needs to be regulated accordingly.
The lack of consequence for care providers that are rated “Requires Improvement” or “Inadequate” means poor, and potentially unsafe, care can continue. Concerningly, many care homes have not been reinspected since before the pandemic, making their previous rating irrelevant and putting people at risk. We have experienced the inaction by CQC leaving people vulnerable to abuse and serious failures of care.
People with concerns about the quality of their care can face an impossible struggle trying to find accountability and resolution. When complaints about poor care must first be raised with the care home, it can be daunting for the person to speak out due to fear of reprisals, including eviction. The CQC does not deal with individual complaints, and the Ombudsman relies on the complaint already being raised with the provider and their process can take months - older people in care who are at risk cannot afford to wait this long.
Our research found that 56% of those who had witnessed poor care in a care setting did not report it to the CQC. 52% of those people reported that they were worried about negative repercussions. We consistently support people who have reported a concern to the CQC where no action is taken, usually when that was already their last resort. 35% of our survey respondents reported that they did not hear back from the CQC after reporting a concern. Even when, on an organisational level, there is a duty to report concerns to the CQC, there is often no action or even response.
We supported Bushra who had reported multiple falls her mother had experienced to the CQC and had safeguarding reports upheld, but no action was taken until a complaint by both us and her was made to CQC. Even then, CQC failed to use this information in the inspection report of the home. It took the death of another resident due to unsafe practice before the CQC found fault with the care home which failed to follow safeguarding recommendations and caused physical harm to its residents by not doing so.
Recommendations
The regulator should deliver inspections more frequently, and without prior notice to the provider to obtain a real sense of the day-to-day care provision.
DHSC should mandate the regulator carry out follow-up inspections within a fixed, prompt timeframe where providers are rated “Requires Improvement” or “Inadequate”, ensuring providers submit a public action plan to the regulator addressing how they will resolve issues identified to minimise safeguarding risk.
DHSC should embed powers to investigate individual complaints into the regulatory process, to ensure high risk concerns are investigated urgently, with the appropriate powers to take action when people are at risk.
Funding
Care can be devastating for families to fund. Local authorities need more funding and less budget cuts which result in them failing to meet their Care Act obligations, which is repeatedly found in Local Government and Social Care Ombudsman outcomes. Local authorities can set rates for different levels of care as a guide for their budgets. However, we consistently support people to challenge when these rates are arbitrarily applied without reviewing the funding is set in accordance with the individual's needs.
There is a postcode lottery for funding and support – particularly where properties are worth less, people will not benefit from true choice of their care. They are likely to still need local authority support when their funds run out. This often leaves their representatives to make a hard choice: seek a placement that accepts the local authority rate, or choose a more suitable but more costly home, which they may have to leave later to save money, disrupting the person’s wellbeing.
In addition, the impact of the resident’s contribution under the Care Act can be devastating on the partner or spouse still living at home, unable to meet crucial bills. This has been made worse through poor financial assessment processes, charging people more than they should be paying.
There is a lack of accountability and transparency about how care home fees are calculated, and we are already beginning to hear of the impact of the increased employer National Insurance contributions causing hikes in fees.
Local authority funding has not kept up with inflation and this has a disproportionate impact on people with diagnoses such as dementia, who need care for longer, coming at huge cost for them and their families.
We regularly hear cases through our adviceline where individuals face a direct cost as they have to pay for more specialised care, whether it is paying for extra care to be brought in to support a person, agreeing to pay Third Party Top Ups to get a safe care home option, or finding good care as a self-funder. This is a huge challenge when care home fees for older people have already increased by 33% in real terms in the last 8 years. As reported in The King's Fund's Social Care 360 report, there is a "doom loop" for social care, where an increase in staff wages raises costs for care providers, meaning they negotiate higher fees from local authorities, who in turn reduce the number of people they support. When older people wait longer to access care, their care needs tend to develop and increase in complexity.
Ultimately, the funding model for care has long been unfit for purpose and grows increasingly unjust – it needs urgent intervention. This has a hugely distressing impact on people who are often already struggling with other challenges around their care. A new funding model for social care needs to consider that social care is fundamental for hundreds of thousands of people to be able to live their life every day. Care should be accessible for everyone who needs it, without additional burden placed on individuals based on the complexity of their needs.
Tony’s contribution to his care home fees was going to leave his wife unable to pay the mortgage on her own. We supported them to challenge the local authority’s financial assessment. Without our intervention to increase Tony’s personal expense allowance, his wishes to support with the mortgage payments would have been ignored causing great distress to him and his wife.
Recommendations
The Government should raise local authority social care funding in line with inflation to address the unjust burden of care costs on people with more complex needs, like dementia.
The Government should ensure local authorities are following the legal requirement to make individual care and financial assessments and not use arbitrary rates to determine people’s fee contributions.
Healthcare
The government should be responsible for ensuring parity between the NHS and social care, but too often fixing social care is seen simply as a way to ease the burden on the NHS. The effects of this we already hear through hospital discharge processes. For example, the Discharge to Assess process where, to free up a hospital bed, people can end up stuck in often unsuitable temporary care placements awaiting care assessments, placed in inappropriate long-term care settings, or returned home to exhausted carers unable to cope, without reviewing their care needs. The narrative on this issue is increasingly disheartening, where people who need care are consistently referred to as “bed-blockers” - like obstacles to be removed rather than people to be supported.
We hear assumptions are made about a person’s abilities on the basis of their age or current mobility status, with no consideration given to their potential for improvement or rehab. Consequently, we hear of people being moved to care settings that cannot meet their specific care needs, or where they are isolated.
CQC’s annual State of Care Report 2024 found that family carers reported that they were not included in conversations with hospitals about discharge and next steps for the patient. The research also consistently heard that people were not aware of a care plan or did not have the opportunity to feed into their family member’s care plan.
The people we support living in care settings struggle to access healthcare professionals such as dentists and GPs. Without trained health practitioners regularly coming into places like care homes, health issues can go unidentified for longer and medical interventions can be made without the practitioner even seeing the person. We’ve supported residents who have fallen and not had medical intervention sought until a relative visited and noticed their pain, only for it to be found in hospital that they had broken bones. In 2023, our healthcare survey found that 35% of respondents who reported difficulties in accessing healthcare during the pandemic, and whose loved one was currently residing in a care home, reported that the person in care had still not resumed normal face-to-face appointments with the health professionals that they needed to see.
Josephine was placed on end-of-life care and a few days later nil-by-mouth, along with being prescribed end of life drugs, having never been visited by her GP. According to the relative, Josephine had never seen her GP since moving into the care home.
Recommendations
DHSC should build stronger integrated care systems, with formalised partnerships between health and care providers, including sharing of digital records at the local level.
DHSC should include care assessments, involving the person and their representative, as a statutory requirement in the hospital discharge process instead of relying on Discharge to Assess.
DHSC should ensure Integrated Care Boards commission regular, in-person GP visits to care homes so that people living in care settings have their health needs monitored, with any additional interventions needed incorporated into their care plans.
DHSC should mandate providers to make referrals to specialist health professionals where necessary, e.g. Speech and Language Therapists, Occupational Therapists, and to ensure recommendations are incorporated into care plans.
Supporting a robust workforce
Staff training
The care certificate is currently not adequate for delivering quality care. As referenced throughout this work, training can be basic and inconsistent, meaning care workers are dealing with complex issues like end-of-life or dementia care with insufficient knowledge and skills. Without opportunity to learn and grow in their roles, care will not be seen as a permanent, rewarding career. We hear confusion from people living in care and their loved ones about what care staff are responsible for or what to expect from their care delivery – this becomes more confusing for people when care is delivered differently depending on the staff member, due to inconsistencies in training.
We hear of lack of staff training having a devastating impact on people’s safety and wellbeing. From lack of training on managing and identifying bed sores leading to a person developing sores and a skin infection, to lack of training on proper use of essential equipment such as recliner chairs leading to a fall and injury and hospital admission.
Armina's care staff, due to lack of training on eating and drinking difficulties, gave her inappropriate and unsafe foods leading to weight loss and choking risks. They also failed to refer her to a Speech and Language Therapist, meaning her care needs were unmet.
Recommendations
The Government should invest in the health and care workforces so that staff members are appropriately trained, with clear distinctions in who should be providing what kind of care.
The Government should introduce the requirement for care workers to be registered, with mandatory qualifications.
DHSC should mandate care staff receive training on the Human Rights Act and care home managers ensure their processes comply with this law, with this monitored by the regulator.
Staff training
Staffing levels are key to good care. When we surveyed our members and supporters, the highest number of respondents said this issue was very important to them, out of all of the topics addressed in this report. With poor pay and recognition for care staff, turnover is high, leading to impersonal care. Skills for Care found the turnover rate for staff in adult social care to be 24% in 2024. When staff members are continually leaving, it not only means a loss of personal connection and awareness of individual needs for those relying on care, but can also increase the likelihood of staff members missing cues that signify declining health. Care becomes inconsistent and unfamiliar, which can be particularly detrimental for people living with dementia (an estimated 70% of people in care homes).
The Department of Health and Social Care’s report into the quality of life of staff in the adult social care sector found that a third of the workforce are planning to leave as soon as they can find another job, double the number of NHS workers who planned to leave in a similar survey in 2022. Low pay, burnout and lack of recognition were the top three reasons cited for wanting to leave the sector.
CQC’s annual State of Care Report 2024 found that the rate of staff vacancies in care homes is at 5%, with the rate across all adult social care at 8.3%. This rate is three times higher than the wider economy.
Recommendations
DHSC should introduce compulsory training at each level of the new care pathway and establish clear progression routes to embed these roles with legitimacy, and improve the perception of care as a valued career path.
The Government should introduce the Real Living Wage as the pay standard for care workers in England, mirroring that in Wales and Scotland, as part of the Fair Pay Agreement.
