Reduced services see unpaid carers pushed to the limit - and desperately worried about winter

20 October 2020

  • Four in five unpaid carers providing more care for relatives
  • 78% reported that the needs of the person they care for have increased during the pandemic
  • Two thirds (67%) worried about how they will cope through further lockdowns or local restrictions
  • Carers UK calls on Government to help reinstate crucial support services as soon as possible, and implement a New Deal for Carers

Family carers are going without crucial services, whilst providing many hours of additional care for loved ones with increasing needs, new research by Carers UK reveals.

This is at a critical point in the Covid-19 pandemic when more restrictions are being put in place, and many expect life to become more difficult over the winter months. Sign in door says 'Closed due to Covid-19

Previous research by the charity in April showed the majority of unpaid carers immediately took on more care for their older, disabled or seriously ill relatives through the lockdown.

Six months later, four in five carers (81%) report that they are still providing more care than before the lockdown.

Nearly two thirds (63%) have expressed worry about how they will continue to manage over winter.

In a survey of nearly 6,000 carers, two in five (40%) said they are providing more care because the needs of the person they look after have increased. Many cited the detrimental impact of the national lockdown on their relatives’ physical and mental health.

A similar proportion of family carers (38%) are providing more care because their local services have been significantly reduced or closed. Covid-19 infection and control restrictions mean most day services are operating at a reduced capacity and some have not opened at all.

Three quarters of carers (74%) said they are exhausted and worn out as a result of caring during the pandemic.  Two thirds (64%) told Carers UK they hadn’t been able to take any breaks whatsoever in the last six months.

Helen Walker, Chief Executive of Carers UK, said: “The majority of carers have only known worry and exhaustion throughout this pandemic. They continue to provide extraordinary hours of care, without the usual help from family and friends and with limited or no support from local services.

“It’s no surprise that carers’ physical and mental health is suffering, badly. I am deeply concerned that so many carers are on the brink and desperately worried about how they will manage during the next wave of the pandemic. Government must prioritise carers in its plans, carry out an urgent review of breaks’ services and ensure that wider social care services have enough funding to manage over winter. We strongly urge local authorities to use the Infection Control Fund to help reinstate crucial day and support services that carers really need.”

The survey showed that 58% of carers had seen their physical health impacted by caring through the pandemic, while 64% said their mental health has worsened.           

Helen Walker added: “It is not just about ensuring that carers don’t break down over the winter. Carers deserve a New Deal that recognises everything they are contributing through this pandemic and builds in the support they need over the medium and longer term. The Government’s social care reform must ‘level up’ the lives of unpaid carers too, who have struggled through this crisis.”

Carers UK is also calling on the Government to ensure that those receiving Carer's Allowance – the main benefit for people caring 35 hours or more every week - receive an equivalent payment increase to those receiving Universal Credit, £20 a week, to help cover the extra costs that caring will inevitably incur over the winter months.

The charity wants to see the Government set out plans for a long term, sustainable, solution to funding social care that recognises the enormous contribution of unpaid carers and has specific measures to support them at its heart.

Read the report in full: Caring Behind Closed Doors 


Carers Week: 4.5 million become unpaid carers in a matter of weeks

08 June 2020

  • 4.5 million additional people caring for older, disabled or seriously ill relatives or friends since the Covid-19 pandemic
  • Unpaid carers and those not caring just as worried about stress and responsibility of providing care
  • UK public demands better deal for unpaid carers
  • Carers Week charities call on Government to recognise unpaid carers’ efforts and rebuild country’s care and support services

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. 

An illustration showing a varied group of people

This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness.

Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic.

Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

On behalf of the charities supporting Carers Week, Helen Walker, Chief Executive of Carers UK, said:

“Recognising the contribution of unpaid carers to our society and properly supporting them has never been more important than during this pandemic. An additional 4.5 million people are caring for sick, older or disabled loved ones – that’s the NHS workforce three times over. It demonstrates the scale of the care being provided behind closed doors, mostly hidden from view.

“Unpaid carers are the pillars of our health and social care systems. Yet many say they feel invisible and ignored. There are thousands caring round the clock without the practical support they would normally rely on to take a break, while others face increased costs accessing food and care products.

“The Government must not take unpaid carers for granted in this crisis. It must ensure their physical and mental health is looked after and it is imperative that, moving out of the pandemic, the Government rebuilds our care system so that carers are supported and families have the services they need to live better lives.”

Polling of more than 4,000 members of the UK general public over 18 shows unpaid carers have become more visible within society since the pandemic began. There is a majority consensus for unpaid carers to receive more support from the Government than they do currently.

  • Nearly half (48%) of the public who have never cared said they are more aware of unpaid carers than before the outbreak.
  • More than two thirds (69%) of the public do not think that unpaid carers have been supported by the Government during the crisis.
  • Three quarters (75%) thought the Government should increase support for unpaid carers: such as better financial support as well as investment in care and support services so that carers can take a break.

The six Carers Week charities are calling on Government to urgently deliver a plan for social care reform and set out long term investment in care and support services. This would give unpaid carers the opportunity to take breaks from their caring role, and stay in paid work if they want to. The charities want to see an urgent rise in Carer's Allowance – currently just £67.25 a week - and a one-off coronavirus supplement, in recognition of the vital role unpaid carers have played in the pandemic and the significant costs associated with caring.


Research: The forgotten families in lockdown: unpaid carers close to burnout during Covid-19 crisis

23 April 2020

  • Reduced or closed care services mean family members are picking up even more care for older, sick or disabled relatives 
  • Carers say they feel ‘overwhelmed’ and are at risk of burning out
  • Carers UK calls for Government recognition of unpaid carers’ efforts during pandemic and increase to Carer’s Allowance Woman looking out window

A staggering 70% of unpaid carers in the UK are having to provide more care for their loved ones during the coronavirus outbreak.

A third (35%) of them are providing more care because their local care and support services have been reduced or closed.

A survey by the national charity Carers UK of nearly 5,000 unpaid carers showed that, on average, carers are picking up an additional 10 hours of unpaid care per week, helping loved ones with personal care, practical tasks and emotional support.

Reduced care and support services, and paid care workers isolating or without personal protective equipment (PPE), mean many carers have no choice but to care round the clock for loved ones with complex health conditions and disabilities - without any hope of a break.

More than half (55%) of unpaid carers told the charity they feel overwhelmed managing their caring responsibilities during the outbreak and are worried about burning out in the coming weeks.

87% of carers said they are worried about what will happen to the people they care for if they have to self-isolate or become ill.

Helen Walker, Chief Executive of Carers UK, said:

“Unpaid carers are fighting the same battle as care staff and many of our NHS workers: yet they do it behind closed doors and with far less recognition.

“Unlike our fantastic frontline workers they are unable to clock off from their caring responsibilities. Many are overwhelmed and incredibly anxious about how they will manage in the weeks ahead.

“Unpaid carers are just as vital in the national effort to keep vulnerable people safe yet many fear that continuing to care around the clock will lead to them burning out.

“Carers tell us they feel ignored and invisible in this epidemic. The Government must ensure their physical and emotional well-being is supported at this challenging time and monitor the impact of the reduction in care services on carers.”

Before coronavirus, social care services were already in short supply and those families with support met a high threshold to get any form of care. Now, some of those services have disappeared and unpaid carers are having to cope alone.

Carers UK is calling on Government to acknowledge the huge efforts of unpaid carers protecting vulnerable people during this epidemic. Carers desperately want paid care staff to have better access to testing and personal protective equipment, as well as wanting access themselves, so they can keep the people they care for safe.

The new research shows 81% of carers are having to spend more money during the outbreak. The top increases in expenditure include spending more on food (72%) – due to lack of supermarket delivery slots and need for specialist food - and household bills (50%). 1 in 10 are spending more on equipment for the person they care for.

The charity is urging Government to increase Carer’s Allowance – the main benefit for people caring unpaid for 35 hours or more each week, just £67.25 a week - to recognise the crucial role they are playing in the country’s fight back against coronavirus. 

Read Carers UK’s report, Caring behind closed doors: forgotten families in the coronavirus outbreak.


Face-to-face health assessments for benefits suspended amid coronavirus outbreak

17 March 2020

Face-to-face assessments for all sickness and disability benefits will beTelephone and headset suspended for the next three months, the government has announced. The change also covers health checks for Universal Credit.

The temporary move, effective on Tuesday 17 March 2020, is being taken as a precautionary measure to protect vulnerable people from unnecessary risk of exposure to coronavirus as the country’s response ramps up in the ‘delay’ phase.

The Department of Works and Pensions (DWP) will ensure those who are entitled to a benefit continue to receive support, and that new claimants are able to access the safety net.It affects claimants of Personal Independence Payment (PIP), those on Employment and Support Allowance (ESA) and some on Universal Credit, and recipients of Industrial Injuries Disablement Benefit.

The suspension of face-to-face assessments also covers new claims to those benefits.

Work and Pensions Secretary Thérèse Coffey said: “As we move into the next phase of our response to coronavirus, it is right we take steps to protect those with health problems.

“Temporarily suspending face-to-face assessments for sickness and disability benefits will allow us to ensure we continue to provide a safety net for those in need, while removing unnecessary risk of exposure to this disease.”

Anyone who has a face-to-face assessment appointment scheduled from Tuesday 17 March onwards does not need to attend and will be contacted to discuss next steps and alternative arrangements, which could involve either telephone or paper-based assessments. It is expected this measure will be in effect for the next three months but we will be regularly reviewing the position in line with Public Health advice.

No further action is required by any claimant as a result of this change. They will be contacted with advice on next steps.

DWP continues to accept new claims for all benefits. Anyone already receiving PIP, ESA, Universal Credit or Industrial Injuries Disablement Benefit, will continue to receive their current payments as normal while alternative arrangements are put in place to review or reassess their claim.

Read the current NHS guidelines on coronavirus, including advice on those who should stay at home.


A quarter of unpaid carers living in poverty

7 February 2020

As many as a quarter of unpaid carers in the UK are living in poverty, especially working age women, according to the Joseph Rowntree Foundation.  Woman putting money in her purse

It has published UK Poverty 2019/20, its annual report on the nature and scale of poverty across the UK and how it affects people who are caught in its grip.

Findings show:

  • Working-age carers have a higher rate of poverty than those with no caring responsibilities, and women of working age who are carers have the greatest risk of all
  • The inability to work is the key driver for poverty among carers. In 2017/18, 36% of working-age carers were not in work, compared with 23% of non-carers
  • If you care for 20 hours or more a week, you have a higher risk of being in poverty than if you care for fewer than 20 hours. This might be because your caring responsibilities compromise your ability to work or the hours you can work. However, to receive Carer’s Allowance you must care for 35 hours or more per week.
  • Those who care 35+ hours a week are three times less likely to be working as those caring fewer than 20 hours a week.
  • The weekly household income is £100 a week less for people who are caring.
  • Carer prevalence is at its highest among working-age adults in their 50s and early 60s, who are twice as likely to be carers as younger adults.

Commenting on the report, Helen Walker, Chief Executive of Carers UK said: “As a first urgent step, the Government needs to “right a wrong” and raise Carer’s Allowance, which is the lowest benefit of its kind at only £66.15 per week.

“Carers should be supported to work if they’re able and want to. The Government has promised to introduce unpaid care leave and we welcome this important step forward, but we would prefer to see this paid so that carers can take the leave regardless of their financial situation.

“It is crucial that the Prime Minister delivers on his promise of social care reform, soon. We hope to see ambitious plans coupled with sustainable, long term investment so that UK families can enjoy much better health, finances and quality of life than they do currently.”

Findings also show poverty is especially high among families where there is an adult who is disabled, at nearly 33%. If there is also a disabled child, the poverty rate is 40 – more than twice the rate where there is no disability.


Mandatory training for NHS staff on understanding learning disability and autism

5 November 2019

The government has confirmed that every NHS and social care worker will receive mandatory training relevant to their role. Image says training

The new training is backed by £1.4 million of government funding and will focus on:

  • understanding learning disability and autism
  • legislation and rights
  • making reasonable adjustments such as using different communication methods for autistic people with sensory sensitivities

As part of this, the government will run a series of trials next year to inform a wider roll-out of the training, which aims to improve quality of care and life expectancy.  

Work is already underway to deliver the training and testing will take place in a variety of health and social care settings to help shape how it will be rolled out and delivered in future.

The specially designed training will be named in memory of Oliver McGowan, in recognition of his family’s tireless campaigning for better training for staff. It will draw on case studies to demonstrate why it is so important.

The announcement follows a consultation process that listened to the views of over 5,000 people, including charities, patient groups, professional bodies and the public. The responses overwhelmingly backed the principle of mandatory training.

Read the easy read document What people told us about our ideas for learning disability and autism training for health and care staff. And what the Government will do next.



'Everyone working together needed to tackle loneliness in Reading'

22 October 2019

A new report on tackling loneliness in Reading calls for a change of culture across the town, Happy and sad facesincluding neighbours and communities working together to look out for people at risk of isolation.

The report, Tackling Loneliness and Social Isolation in Reading, England  which was presented to Reading Borough Council presents a picture of loneliness and social isolation in the area brought about in part by cuts to public sector services.

Tackling Loneliness saw 21 voluntary, community organisations and statutory agencies – including Reading Mencap - take part to provide their views on the issue. In addition focus groups were held with 65 members of the community including service users, volunteers and groups of people at risk or experiencing loneliness from diverse backgrounds.

The report highlights best practice in Reading, particularly focusing on how loneliness may stem from other concerns including mental health, addiction and homelessness.

It then makes recommendations for action including:

  • Greater provision of specialist support services for groups at risk of loneliness, encompassing tailored one-to-one support, as well as group activities, with increased opening hours, particularly at weekends
  • Fostering more collaborative working ‘joined-up’ thinking and signposting between organisations, Reading Borough Council and primary healthcare providers
  • Fostering good neighbourliness, supportive faith communities and community development
  • Increasing the affordability and social accessibility of transport, including through concessionary fares, building people’s confidence, supporting and raising awareness about alternative transport services for people with complex needs and carers, such as ReadiBus and neighbourhood volunteer transport initiatives
  • Providing more accessible information, communication and promotion of activities and services in appropriate formats.

Dr Ruth Evans, an Associate Professor in Human Geography at the University of Reading said: “This research provided an opportunity for many people in diverse circumstances to give their views and experiences of the important issue of loneliness.

“Service-users and their supporters have told us that cuts to public services mean that specialist support, social and leisure activities that help to reduce isolation and loneliness are under threat and  people may not able to  access crucial help.

“The report is a starting point for addressing the complicated issue of loneliness in our town. We have highlighted best practice from various voluntary and community services and statutory bodies and I am grateful to all those who have supported the research.

“The reality is that tackling loneliness requires everyone working together. The public sector, voluntary and community sector, communities and individuals all have a part to play in looking out and caring for everyone in our community.”

Cllr Graeme Hoskin, Reading’s Lead Member for Health and Wellbeing, said: “Loneliness can affect any of us and the work on this report is a good opportunity to highlight the importance of tackling social isolation. Feeling connected is good for us – for our mental and our physical wellbeing.  By working together I’m sure that we can make Reading a town where people feel connected in our community.”


'Perfect storm' for people using learning disability services

Annual State of Care report

15 October 2019

The care given to people with a learning disability or autism is not acceptable.

Too many people with learning disabilities or autism and their families continue to be failed by a lack of local services and poor quality care, according to the Care Quality Commission (CQC).

In its annual State of Care report, the CQC found that quality ratings have been maintained overall – but people’s experience of care is determined by whether they can access good care when they need it.

When people can’t access the services they need, the risk is that they are pushed into inappropriate care settings – ending up in emergency departments because they can’t access the care they need outside hospital, or in crisis because they can’t access community based mental health and learning disability services.

Difficulties in accessing the right care can mean that people with a learning disability or autism end up detained in unsuitable hospitals.

This year’s State of Care considers the pressures faced by health and social care as a whole – but focuses particularly on inpatient mental health and learning disability services, the area where CQC is seeing an impact on quality.

As at 30 September 2019:

  • 10% of inpatient services for people with learning disabilities and/or autism were rated inadequate, as compared to 1% in 2018
  • 7% of child and adolescent mental health inpatient services rated inadequate (2018: 3%)
  • 8% of acute wards for adults of working age and psychiatric intensive care units (2018: 2%)

Since October 2018, 14 independent mental health hospitals that admit people with a learning disability and/or autism have been rated inadequate and put into special measures. Two of these services have since improved, three are now closed and one service is still registered but is closed to new admissions with no people resident.

Although inspectors have seen much good and some outstanding care, they have also seen too many people using mental health and learning disability services being looked after by staff who lack the skills, training, experience or support from clinical staff to care for people with complex needs.

In the majority of mental health inpatient services rated inadequate or requires improvement, a lack of appropriately skilled staff was identified as an issue in the inspection report. This reflects a national shortage of nurses in these areas of practice, with 8% fewer learning disability nurses registered with the Nursing and Midwifery Council in 2019 than 2015.

Ian Trenholm, Chief Executive of the Care Quality Commission (CQC) said:

“In this year’s State of Care, we have highlighted mental health and learning disability inpatient services because that’s where we are starting to see an impact on quality – and on people. There has been a deterioration in ratings in these services – and our inspection reports highlight staff shortages, or care delivered by staff who aren’t trained or supported to look after people with complex needs, as a reason for this.

“Increased demand combined with challenges around workforce and access risk creating a perfect storm – meaning people who need support from mental health, learning disability or autism services may receive poor care, have to wait until they are at crisis point to get the help they need, be detained in unsuitable services far from home, or be unable to access care at all.

“We are strengthening our approach to how we look at these services, and how we use the information that people share with us, so that we can act more quickly to spot and act on poor care. But having the right staff to deliver good care is crucial to turning the tide – as are better integrated community services to prevent people ending up in the wrong place. We’ve seen some excellent care where services collaborate and we want to see more local services working together."

Read the full report

State of Care 2018/19 Easy Read


Bereaved families to receive funeral payments quicker

17 July 2019

Families grieving the loss of a loved one will find it easier to get help to meet upfront funeral costs, as a result of a new change to speed up Funeral Expenses Payment claims. 

Previously, a Funeral Expense Payment claim could not be processed without a confirmed date for the funeral to take place, which could lead to longer waiting times for payments to be processed.

But following an important change, families will now be able to make a claim with an estimated funeral date, providing that other key information is supplied. The ability to use an estimated date in a claim is set to significantly speed up the process and payment.  

This new move to speed up the Funeral Expenses Payment process is in addition to a recent change in the evidence required to process a claim.

Recent improvements mean that instead of a final invoice – which is usually received after the funeral – families can instead supply a funeral director contract as an indication of funeral cost. This evidence can be submitted to the Bereavement Support team in advance of a funeral, therefore ensuring earlier access to financial support.


Unpaid carers face bleak financial future

9 July 2019

Carers UK has released the findings of its State of Caring survey which show the huge personal and financial cost of caring unpaid for a loved one. Empty purse

On top of providing tens of hours of care every week for family members or friends, more than two thirds (68%) of carers are using their own income or savings to cover the cost of care, equipment or products for the person they care for. As a result, many are struggling financially and are unable to save for their own retirement.

Two in five carers (39%) say they are struggling to make ends meet and more than half (53%) of all carers are unable to save for retirement.

Those struggling to make ends meet are the hardest hit as carers with little money to spare are forking out hundreds of pounds to cover the costs of essentials like nutritional supplements, bed pads and mobility equipment.

The vast majority (78%) of carers who report they struggle financially are paying towards the cost of care services or equipment for the person they support. For those on a low income or receiving Carer’s Allowance – the benefit for people caring for more than 35 hours a week and just £66.15 per week – it is a never ending struggle to make ends meet. Three quarters (73%) of this group are unable to save for retirement.

The report is based on the results of Carers UK 2019 State of Caring Survey of more than 7,500 people currently caring unpaid for family or friends, the majority of whom provide over 50 hours of care every week.

Read more in the full report.

Read the press release.


Berkshire March - Forbury Gardens, Reading

Thursday 30 May 2019 1pm - 3pm SEND National Crisis Berkshire










24 May 2019



The funding crisis in our schools and local authorities is having very profound effects upon our most vulnerable children - those with Special Educational Needs and Disabilities, writes the Berkshire Send Crisis group.

The current SEND Code of Practice (2014) is NOT providing the promised learning experience for our children and young people. This is leaving thousands of individuals emotionally and physically exhausted due to the direct failings of our local authorities, and the discrimination faced when trying to access children’s fundamental right to an education.

There are so many parents and carers struggling and battling an unfair system for their children with barriers thrown up against them. In 2016 only 55.7% of new Education, Health and Care Plans (EHCPs) were issued within the 20 week time limit and there is rarely any action taken to ensure that local authorities are adhering to procedures correctly and on time. Instead we are told that “There is no money” to support our children, and so they continue to struggle unsupported.

In Berkshire, schools are reluctant to take in children with SEND, illegally exclude children with SEND due to having insufficient staff, and our local authorities drag their heels over EHCP applications, frequently forcing parents and carers to go to tribunal just to get any support for their children at all! The funds given to schools to support children with SEND are not ring-fenced, and are frequently used for basics such as staff salaries and supplies, due to the overall lack of funding in schools.

We have now decided to act. Across the country, parents, carers, teachers, organisations, businesses, campaigns, support groups and people from all walks of life will be marching on Thursday 30 May to protest about these failings. The Berkshire SEND National Crisis March will take place in Reading, starting with guest speakers at Forbury Gardens at 1pm, before we march up Broad Street and back to Forbury for more speakers.

Our aim: We want the current SEND and EHCP legislation to be re-evaluated with parent/ carer consultation in line with parent partnership and with continuity amongst regions instead of local policy. We are asking for independent parent governor boards to be implemented with enforcement powers to ensure lawful and ethical practices by local authorities throughout and during the SEND / EHCP process and feel that it is vital that the pathway to diagnoses be increasingly accessible and have a shorter time frame for assessment, to allow optimum efficiency and to enable a more productive outcome for young people and children with disabilities or additional needs.

The law must change to protect our most vulnerable children.

If you would like to be involved in the Berkshire March, please get in touch with the organisers Ruth Rae, Jacqueline Testo, and Annabel Yoxall via email on, or find us on Facebook:

Our campaign objectives are below:

SEND National Crisis Overriding Objectives

Funding to increase to match needs and ring-fenced for SEND

ALL funding to be increased to meet needs of the child via their EHCP, NOT based on a resource budget.  The child and their needs MUST be at the centre of the EHCP process and ALL Local Authorities to identify ALL needs and specify and quantify provision to be delivered. 

Pathways to assessment and diagnosis MUST have a national maximum 6 week turn around as part of an EHCP assessment as defined in the SEND Code of Practice with schools to be adequately funded to provide early intervention and SEN support. Central Government must fund the EHCPs issued and for SEN support within schools for ALL children to reach their full potential and the funding must be ring-fenced for SEND needs.

Increased funding that MUST be provided independently from the Local Authority to support parents in understanding the SEND process via charities and Parent Partnership Forums in order to make tribunal appeals and Judicial Reviews accessible to ALL parents.

Assessing, monitoring and accountability for improved Educational Outcomes for each child with SEND

Local Authorities must be transparent with their service provision and held accountable by disciplinary action, when evidence that a child’s educational needs have been neglected.

Published data on each Local Authority, in league tables, twice yearly to an independent body such as Ofsted; to summarise their Key Performance Indicators on key areas of the SEND provision process so performance can be measured outside of a formal inspection.  Key indicators could include: number of EHCP requests refused, tribunal outcomes.

ALL costs including private reports via the tribunal process and for Judicial Review to be reimbursed to parents where Local Authority have lost the case or found at fault by the Local Government Ombudsmen. Parents and carers to be provided access to LGA as the current complaints policy hinders the parental right to complain and also delays effective reviewing and implementing of necessary services for each child.

A volunteer Parent and carer boards to be established in each county to work alongside regulatory bodies such as Ofsted, to monitor the delivery of SEND services.

There MUST be tracking of progress of ALL SEND children until the age of 25. 

One consistent SEND process that ALL Local Authorities MUST follow

ALL Local Authorities MUST follow the SEND Code of Practice and the child and their needs must be at the centre of the EHCP; staff MUST have regular, compulsory training. 

ALL local policies based on resources and not need, such as bandings, MUST be ceased, with one consistent SEND policy nationwide; used for all SEND services and enforceable by law. National policy to provide guidelines and conduct rules in terms of parent partnership and SEND service delivery. Co-production between all SEND services so that plans are not weighted to education. Health and social care providers and practitioners to have more involvement in the writing, issuing and deliverance of plans.


More than 600 people quit work to look after older and disabled relatives every day

5 February 2019

  • 1 in 7 of the UK workforce caring for a loved one  Leaving work with possessions in a box
  • 6 million have quit their job to care
  • Carers UK calls for better employment rights including five to 10 days paid care leave

New research by Carers UK reveals that 2.6 million have quit their job to care for a loved one who is older, disabled or seriously ill, with nearly half a million (468,000) leaving their job in the last two years alone - more than 600 people a day.

This is a 12 per cent increase since Carers UK and YouGov polled the public in 2013.

The findings also show that more people are caring than previously thought, with almost 5 million workers now juggling their paid job with caring – a dramatic rise compared with Census 2011 figures of 3 million.

The research emphasises the need for UK employers to support the rapidly increasing number of staff with caring responsibilities to stay in the workforce.

Previous research shows those aged 45-64 are most likely to have a caring responsibility, providing a strong driver for employers to support and retain some of their most skilled and experienced employees.

It comes as Employers for Carers, a group of more than 115 employers committed to supporting carers in the workplace and supported by Carers UK, marks its 10th anniversary as a formal forum and launches Carer Confident, the first UK-wide employer benchmarking scheme of its kind.

The pioneering scheme recognises and accredits UK employers who have built carer friendly and inclusive workplaces.

Read the full report here


Research: Financial pressure of caring unpaid for a loved one intensifies over time

30 November 2018

  • New research shows that unpaid carers’ finances worsen the longer they’re caring for a loved one
  • Half of people caring for more than 15 years and struggling financially are having to cut back on food or heating
  • UK's leading carers’ charity urges local authorities and employers to provide accessible information on carers’ rights How will I ever get out of this debt?

Caring unpaid for a family member or friend who is older or disabled can have stark financial implications for carers over time, research published by Carers UK, reveals.

The study shows that just two in five (44 per cent) of those caring for more than 15 years could afford their bills without struggling financially, compared with three in five (62 per cent) of carers in their first year.

Double the proportion of people caring for over 15 years have been in debt compared with those in their first year.

The number of carers in debt because of caring increases from 12 per cent of people caring for a year or less to 19 per cent of those caring between five and nine years. The proportion rises steeply to 25 per cent of those who have been caring for over 15 years.

The new research reveals how the financial hardship experienced by many carers is intensified over time with their financial resilience diminishing the longer their caring role continues. Carers looking after someone for more than ten years are having to make tougher financial decisions about cutting back on spending, borrowing money or using savings to manage.

Of carers struggling financially, 42 per cent of people caring for between 1 and 4 years are cutting back on essentials such as food and heating, rising to 50 per cent of those who have been caring for over 15 years.

Emily Holzhausen OBE, Director of Policy and Public Affairs at Carers UK said: “We know that caring unpaid for a loved one has significant financial implications for many people, with two million giving up work to care and Carer’s Allowance the lowest benefit of its kind.

“Our research shows that financial hardship worsens for carers the longer they’re caring and underlines the real need for them to have the right support and information about their rights early on, so they can best support themselves in the long-run. Carers who wish to continue or return to work should have the support to do so.

“It’s easy to miss out on the financial support available and we are urging local health and care authorities and employers to maximise early help for carers by making policies and rights to financial support clear and accessible. Carers can also make the most of our Thinking Ahead tool which helps prepare for the potential costs involved in caring for a loved one to help plan ahead.”

The research comes on Carers Rights Day - 30 November 2018 - an awareness day aimed at ensuring the nation's 6.5 million carers get the crucial information about the rights, financial support, and practical help they are entitled to.


Ministers and councils urged to dump ‘disability tax’

Monday 19 November

A survey of more than 600 disabled people revealed that many raided their budgets for food, housing or heating or went into debt to pay for the basic personal support they need for day-to-day survival. Some 40% said charging had increased substantially over the last two years – often by more than half. Piggy Bank

The research, by the Independent Living Strategy Group, uncovered wide variations between local authorities in both the amount they charge for social care support - and who they charge.

The study aimed to establish whether charging is undermining people’s wellbeing and independence – key features of social care services under the Care Act 2014. It concluded that additional stress and the need to cut back on other living essentials show that it is.

The group’s chair, Baroness Jane Campbell, said: “Support provided under the Care Act is meant to improve the wellbeing and independence of disabled people. By charging many for that support, the system is making a mockery of the spirit of the legislation and causing worry, stress and poverty.

“Charging raises a relatively small sum of money which is pushing up costs elsewhere. The financial impact of personal care neglect such as pressure sores, kidney infections or falls, as well as stress related illnesses, means finding extra resources for the NHS.

“That false economy is compounded further by the block that charging poses on integration of health and social care – the holy grail for efficiency in our care services. The money raised through means-tested charges represents only a tiny fraction of the £7 billion removed from social care budgets since 2010.” 

Only 17 of the 152 councils which provide social care know how many people declined or abandoned social care packages they had been assessed as needing once they learnt how much they would have to pay.

The local authority responses to the group’s Freedom of Information request confirm that charging for basic personal support services is inefficient and counter-productive. Around 11% of the funding generated is swallowed by the cost of means-testing and writing off bad debts. The £5 million raised is just 12% of the community services budget yet it has a dramatic impact on those who pay the charges.

Although the report calls for social care charges to be scrapped (as they have been in the London Borough of Hammersmith and Fulham), it proposes other recommendations for the Government and local authorities if that call goes unheeded. These include:

A requirement on councils to provide clear information on how charges are calculated and the right to appeal

Councils should monitor the proportion of people who decline – or give up – care packages following a financial assessment

All councils should undertake an equality impact assessment of their charging policies

Local authorities should work with disabled people’s organisations to agree what costs and income should be included in financial assessments.

Sue Bott from Disability Rights UK said: “If councils are to persist in this iniquitous tax on disability, they must at least reintroduce some consistency and clarity to their approach. The many councils that have failed to conduct an equality impact assessment – and to monitor the numbers of disabled people driven out of the care system by charging – must also get their act together.”

You can read the report in full here.


Shocking new report on children with learning disabilities

Half aren't diagnosed in childhood; those who are won't collect their pension.

Monday 5 November

A new report published by the UCL Institute of Health Equity (IHE) shows the Government’s emphasis on ‘fairness’ and fixing a ‘broken society’ has failed, catastrophically, for hundreds of thousands of children with learning disabilities. Sad boy

The IHE report A fair, Supportive Society shows the most vulnerable in society – those with learning disabilities – will die 15-20 years sooner on average than the general population – that’s 1,200 people every year.

More shocking, explains the IHE’s Director, Professor Sir Michael Marmot, is the fact that this difference is not an inevitable consequence of the underlying condition that led to the learning disability.

He said: “This is a direct result of a political choice that destines this vulnerable group to experience some of the worst of what society has to offer: low incomes, no work, poor housing, social isolation and loneliness, bullying and abuse.

“A staggering 40% of people with learning difficulties aren’t even diagnosed in childhood. This is an avoidable sign of a society failing to be fair and supportive to its most vulnerable members. We need to change this. The time to act is now.”

Read more on the Institute of Health Equity website

Easy Read Version 


Disabled passengers to keep companion bus passes

Tuesday 30 October 2018

Companion bus passes will continue to be accepted on buses in Reading for disabled passengers who have difficulty travelling alone.  Bus stop bell

The passes – which allow for free bus travel for people accompanying Access Pass holders on journeys – had been put forward as a potential budget saving by Reading Borough Council earlier this year.  More than 1,300 responses were received in response to a public consultation in May when the council wrote to all of its 6,000 Access Pass holders proposing changes to the current Access Pass scheme in Reading, including the removal of companion pass element.

At a meeting of the Council’s Policy Committee on Monday 29 October Councillor Tony Page, Reading’s Lead Member for Strategic Environment, Planning and Transport, confirmed the saving associated with the companion pass element of the Access Pass scheme would no longer be taken forward.

Responding to a question by Councillor Rachel Eden, Chair of Access & Disabilities Working Group, Councillor Page said: “The council has historically provided a more generous scheme with additional discretionary elements for both holders of the older person and disabled (Access) concessionary pass. However, like all local authorities, the council faces significant financial pressures with reduced funding from central Government, and increasing demands on its services.

“The consultation was undertaken between 25 May to 20 July and more than 1,300 responses were received.

“Initial analysis of the responses has demonstrated a clear need for the Companion Pass element of the scheme to remain, as this provides a vital lifeline for disabled residents who are unable to travel alone and rely on carers to help them get out and about. I am pleased, therefore, to announce that the council does not intend to pursue this element of the overall budget saving proposal.”

A full copy of Councillor Page’s response can be found at (Item 4 – petitions and questions).

In April 2017, the council removed a number of the discretionary elements of the scheme for Older Person pass holders.   

In February this year the council then agreed to consult with nearly 6,000 Access Pass Holders on a further budget saving proposal which contained three separate elements.  They were to revert to the English National Concessionary Travel Scheme (ENCTS), which only permits free weekday bus travel from 9.30am until 11pm; no longer provide free travel on ReadiBus services for Access Pass holders; and no longer accept companion passes.

The companion pass element will now not be taken forward. Before a final decision is made on the remaining two elements of the proposal, further consultation will take place with holders of the Older Persons Pass who – alongside Access Pass holders – are also eligible to use ReadiBus services for free. Feedback from Older Person’s Pass Holders will then be analysed, alongside the responses already received.

A final decision on any future changes to both the Access Pass and Older Person’s Pass schemes will be taken at a future meeting of the council’s policy committee. All responses will be considered alongside the council’s financial position. Any changes to the scheme that are approved by the committee would then not come into effect until 1 April 2019.