Waiting for social care reform

Social care services offer people with the practical support they may need to live independently. When it works well, social care support can be life changing.

We hear positive experiences from people who have managed to access the care they needed, delivered by staff who often go above and beyond.  People talked about feeling more independent, and family members appreciated the peace of mind that good, compassionate care provided to their loved ones.

Unfortunately, the teams delivering social care face many challenges, and we have also heard less than positive stories from people who can’t always get the help they need. While we wait on social care reform, this long read will explore some of the challenges facing people who need social care, and some solutions that local Healthwatch have recently proposed.

The plan for social care reform

The Government has announced plans to set up an independent commission on adult social care chaired by Baroness Louise Casey. This commission will aim to develop cross-party consensus on social care reforms, with interim findings reporting in 2026 and final recommendations in 2028. We welcomed these plans.

Meanwhile, the Health and Social Care Select Committee has called for evidence to understand the financial and personal costs not reforming care has on individuals, local authorities, social care providers, the NHS, and the wider economy. We responded to this inquiry, setting out the ongoing impact delays have on older people, disabled people and unpaid carers.

Three things people told us about social care

We looked at our evidence on social care and identified three key issues affecting people. None of these issues are new:

People find it difficult to access the social care they need

We heard a lot about people’s difficulties in accessing care. People struggled to get a timely social care assessment from their local council.  One person described waiting for nine months and ending up with further injury because they did not have any support at home.

People who had moved home to another local authority area experienced particularly long delays in being assessed for social care or home adaptations. They described having to go through assessments twice, increasing the delay before they got the help they needed.

Even once people are assessed to receive social care, they experience delays in receiving care packages after assessments. We heard that sometimes, no care followed.

“I’ve been waiting more than 12 months for a carer. I’ve had one assessment which didn’t take my complex needs into consideration. I was offered an insanely slow amount to find a carer (£13ph) for London - despite people with the same condition being awarded £16-£22 per hour in other parts of the UK. After sending proof of this I was given a second assessment four months ago. Money was only raised to £15 per hour which is still on the low side. I could have died in this last year waiting for care, if it wasn’t for family flying over from abroad.”

Story shared with Healthwatch Kensington and Chelsea

Arranging a package of social care support after a stay in hospital relies on joined-up care and communication between NHS teams, local councils and social care providers. 

This wasn’t always in place. People talked about disjointed systems:

My husband came out of hospital at end of October. They said he needed care upon discharge, and he went into a care home where he would be assessed. After two weeks we were no further forward, so I discharged him. The discharge team then kicked into action, but still no care firm available. Meanwhile I am on the waiting list for a carers assessment, but there is no sign of anyone assessing me. I am not managed by the same team, but another one. Why haven’t we been assessed as a household by one team? The various teams do not speak to each other.”

Story shared with Healthwatch England

All of this makes the system hard to navigate – particularly for those who don’t read or write English, those looking for support for themselves, and those trying to find information at the point of crisis. 

There is a high level of unmet and under-met need

We heard about a range of different social care needs and how they are met. The extent to which they are met differs. For some, the care they need is too expensive, so they can’t access the full extent of the social care they need:

“I need help getting showered and dressed because of seizures and falls. Since I left hospital last year, I still haven't had any care package. I'm having to pay for my own care from my attendance allowance. However, the cost ... comes to nearly £170 per month more than my benefits.  Because Neurology is still investigating a possible brain tumour, Social Services say I'm not disabled enough to qualify for any help. So I'm having to cut down on my care to buy food. On the days I can’t afford the care company carers I can't shower or dress.”

Story shared with Healthwatch England

We heard that some people who weren’t from a White British ethnicity weren’t aware that they could get care. If they were able to get care, they were concerned it wouldn’t be culturally appropriate. Research by Healthwatch Kirklees about ethnically diverse people’s experience of intermediate care services found low awareness of services among Black and Asian people and of how support could meet their cultural, religious and language needs.

“Being elderly generation when I got ill, I would have liked for someone to come in and help me with personal care and shopping/preparing meals etc. My family could not come in to help due to my illness and I had to be in isolation, and I live alone. At discharge I would have like to go to intermediate care, my family are all busy and work so this would have helped me, especially if someone could speak to me in my preferred language.”

Story shared with Healthwatch Kirklees

People rely on unpaid carers to fill the gaps in the system

We heard from unpaid/informal carers who are filling in the gaps in the social care system. These are usually friends or family members. They told us they feel unheard and unvalued by the health and social care community, yet they provide an invaluable unpaid resource in support care. Carers described being left out of important decisions that affect the person they are caring for, even though they are the person that most understands what care they might need:

"I am sole carer for a non-relative living in my home who has multiple, complex physical and mental health issues. Trying to get a Carers Assessment and a Care Plan for him has proved impossible so far. No-one joins the dots; no formal assessments done. I am excluded from discussions so they have only a partial picture. I am 72 so this is not sustainable long-term.”

Story shared by Healthwatch Richmond upon Thames

We heard that some social care professionals assumed that that informal care/family care was sufficient. This had knock-on consequences for carers, including for their physical or mental health:

“The daughter feels that the social services expectation is that she can manage with her mother, but this is not the case, and she feels afraid and exhausted. They are even talking about closing the case as she has family care. The house in Bristol is uninhabitable without some help and her mother is increasingly unpredictable and the daughter feels she has nowhere to turn.”

Story shared with Healthwatch Bristol

Six ways to improve social care

Healthwatch leaders from communities across England came together for our annual conference and discussed key challenges facing social care services. 

Drawing on the experiences of people in their communities, they mapped out how the social care system can work better for people who need help and how local Healthwatch teams can help.

Increase funding

Healthwatch teams recognise that many social care services’ problems are caused by inadequate resources, leading to variations in available support and unmet needs.

Recommendations for improvement:

• Increased and long-term funding from the central government delivered alongside comprehensive reform.
• Ringfenced capacity funds to tackle social care assessment, review, and care package backlogs.

Improve awareness and access to social care

Healthwatch leaders discussed the issue of low public understanding and awareness, including what support is available. When people try to access help, getting the right information can be a huge challenge.

Recommendations for improvement:

• A national audit of unmet care needs, focusing on high-need demographics to ensure everyone who needs support can access it.
• More proactive communication from services to people who might benefit from social care.
• Simpler information on what support is available in accessible formats.
• Development of local relationships between councils and their local Healthwatch teams to help commission social care services that meet the unique needs of communities.
• Better use of Care Act advocates and local Healthwatch teams to help people navigate the social care system and to better understand how care is coordinated between social care and NHS providers in their local area.

Improve support for unpaid carers

Healthwatch teams understand how much more work unpaid carers have to do, the sacrifices carers make, the hidden NHS and social care costs such as transport costs picked up by carers, and the lack of support for unpaid carers.

Recommendations for improvement:

• Ensure caring responsibilities are recorded by health and care teams so carers can be proactively identified and supported.
• Develop a new National Carers Strategy to end the postcode lottery for accessing care and make more support available.
• An evaluation of NHS and social care benefits and identify where gaps are failing unpaid carers, including a total overhaul of Carers Allowance to increase the total benefits provided, provide access to more funding for those caring for multiple people, and allow more than one carer to claim for the caring of an individual. 

Address workforce challenges

Healthwatch teams hear stories about workforce challenges from members of the public and staff who describe feeling underpaid and undervalued. High turnover often leaves services understaffed, or with people unable to build vital relationships with their care workers.

Recommendations for improvement:

• Better training for social care workers, including cultural awareness training.
• Support the more effective integration of the social care workforce with NHS teams.

Better care after discharge from hospital

Whether leaving hospital for short-term support, or returning to their long-term social care support, we heard about the challenges facing people and services. These include a lack of available support, including follow-up and mental health support, unsuitable (and sometimes dangerous) housing arrangements, financial challenges, and a lack of transport support to get home from hospital.

Recommendations for improvement:

• Better coordination between NHS teams, social care teams, and community organisations.
• More funding to voluntary, community, and social enterprise (VCSE) organisations that provide important information and support to carers and people who need care.
• Better communication with people leaving hospital so they understand what further support they will receive, when, and from who.

More personalised and better coordinated care

Social care should be about personalised support. Services should be flexible enough to deliver care in a unique way to each individual and support them to live independently.

Recommendations for improvement:

• Involving members of the public in the design of digital social care systems.
• Involving people in the commissioning of services and personal care planning.
• Improved access to advocates to help people understand their rights, how to navigate the system, and ensure assessments are accessible and personalised.