A Cry for Hope – our new report published today
March 13, 2021
Our new report A Cry for Hope: why 2021 must be the year for social care reform based on a survey of over 4,000 people who need social care is published today. The report reveals that because of a lack of care 1 in 7 (14%) said they needed hospital treatment, and more than a quarter (28%) said their health had deteriorated.
The situation was worse for carers where 2 in 5 (41%) said their health had deteriorated because of their caring responsibilities.
The revealing statistics show how a lack of social care can dangerously impact people’s health and, potentially, overstretched hospitals. Further statistics reveal that nearly 1 in 4 said they had asked for help during the pandemic but didn’t receive any.
The survey of 4,005 people also revealed, because of a lack of care:
- Nearly 1 in 10 (9%) missed medical appointments
- More than 1 in 10 (12%) have been unable to get food or shopping
- More than 1 in 3 (32%) have felt lonely
- More than 1 in 10 (11%) have been unable to work
A further 1 in 10 said they were often worried about how to cope and stay safe and
3 in 10 (31%) of those who had difficulties doing day to day activities said they never got any help or assistance.
The Alliance is calling on the Prime Ministers to treat social care with the same parity of esteem as the NHS and to fulfil his promise to fix social care by urgently bringing forward reforms and increasing funding so people can get the care they need.
The survey results are published in a new report ‘A Cry for Hope: why 2021 must be the year for social care reform’. Alliance Chairs who are also senior charity leaders: Caroline Abrahams at Age UK; Emily Holzhausen at Carers UK; and Jackie O’Sullivan at Mencap have reflected on the experiences of the different groups they represent: older people, working age disabled adults and unpaid carer, all of whom have been hit hard by the pandemic:
Caroline Abrahams, Co-chair of the CSA and Charity Director of Age UK, said: “Our threadbare social care service was already unable to help a large portion of those who needed care before the pandemic, now its fragility is adding unnecessary pressure on hospitals just when we are all making huge sacrifices in order to protect the NHS. We know unpaid carers and care staff are doing all they can but there simply isn’t the money to give people the care they need.
“Good quality care and support results in healthier people, and whilst that might mean greater investment in social care, it has the potential to save NHS resources. More importantly, it is the right thing to do. These two important issues are interdependent and need to be treated equally so people can get the care they need.”
Sue Gallagher, 77, whose husband didn’t receive the care he needed and ended up being sectioned in hospital for 11 weeks, said:
“The lack of adequate social care support before the pandemic started was a real issue and because of a lack of care during the pandemic he spent much more time in hospital than should have been necessary. Families like mine continue to find things difficult. I’m worried about the lack of support for people’s conditions, as well as for their loved ones at home.”
Sue and Bernard’s story: At the end of 2019 Bernard Gallagher, aged 84 from Kenilworth in Warwickshire, was diagnosed with Lewy Body Dementia. His wife Sue, aged 77, was looking after him at home but needed some respite care. Bernard went to stay in a care home, but it was unsuitable, he ran away and after two days Sue had to bring him back home. Despite struggling to cope, over five months she received no help of social care. Sue asked for him to be assessed by their local doctor but was told they had sicker patients to look after.
From this point, Sue received no social care support at home, support that she believes could have helped them both and ultimately could have prevented Bernard from being sectioned for 11 weeks in hospital during the first lockdown in April, after he was eventually assessed by a new practice.
When asked ‘What does good care mean to you?’, people said:
“Better support for the person I care for would reduce my care and support needs, giving both of us better quality of life.”
“Having control over my life.”
You can download a full copy of the report here.
CSA’s response to the government’s spending review
November 25, 2020
Caroline Abrahams, Charity Director of Age UK and Co-Chair of the Care and Support Alliance said:
“Today the Government passed up the opportunity to play fair with social care, instead granting it insufficient extra money to safeguard the current level of services through next year. Against the context of the pandemic, which is both driving up the level of need, and weakening the finances of providers, this is a decidedly reckless approach. Local authorities are once again being asked to square an impossible circle and this ungenerous settlement does very little to help the NHS either. However, it’s older and disabled people, and their families and carers, who will as ever pay the biggest price, with more likely to have to manage without the support they need. This is a bitter pill to swallow, especially after everything social care has been through this year.
“The Spending Review documentation says that the Government will bring forward proposals on the longer-term reform of care in 2021, but as a result of the decisions announced today social care will be even weaker by then than it is now. It’s hard not to conclude we’ve gone backwards.”
CSA launches its ‘Big Social Care Review’
October 26, 2020
Today, the Care and Support Alliance, launched its ‘Big Social Care Review’ to find out about the experiences of those needing care during the pandemic.
Take part in the survey here
An easy-read version can be found here
The survey is open to all those who need care in England and aims to get a picture of what care people have needed since March, what they have received, and what could have made things better. The last time the alliance ran a survey of this kind was in 2018, and nearly 4,000 people took part. They found that because of a lack of care:
• Over a third of people had not been able to leave their house,
• Over a quarter of people had not been able to maintain basics like washing, dressing, or visiting the toilet.
• 1 in 5 people missed meals because of a lack of care.
The alliance is keen to hear from all those that need care, including carers, to get a good picture of people’s experiences. The results will be used as part of the alliance’s campaigning work to ensure the Government fully funds social care and that people get the care they need when they need it.
Joint APPG Meeting and letter published in The Times
July 28, 2020
The CSA held a joint All Party Parliamentary Group (APPG) meeting on 15 July, bringing together Chairs and Co-Chairs of APPGs with an interest in social care.
These Parliamentarians were joined by some of our member organisations who provide the secretariat to these Groups, and discussed some of the issues the social care system has faced during the coronavirus outbreak. They also considered how they can make the case for long-term reform of the system in Parliament and to the Government.
Chaired by Dame Cheryl Gillan, Chair of the APPG on Autism, the meeting was hugely productive and the group agreed to form a loose sounding board and continue meeting as a collective in the future.
The meeting also led to a joint letter being published in The Times on Saturday 25 July, calling for a solution to the social care crisis. This was signed by nine Parliamentarians from across both Houses representing these APPGs. A copy of the letter and its signatories is below:
Sir, As chairmen and women of all-party parliamentary groups (APPGs) concerned with social care, we met last week to consider the future of this vital service given all that we have learnt in the past six months. We are from different political parties and did not agree about everything, but we did identify much common ground. Above all, we agreed that a social-care solution is needed now more than ever to help disabled people and those with health conditions, older people and unpaid family carers too. If we can hold this kind of constructive dialogue we think others can and we look forward to formal cross-party talks to be called soon, which we will do everything we can to support.
Dame Cheryl Gillan, APPG on autism
Mark Harper, APPG on learning disability
Barbara Keeley, APPG on ageing and older people
Baroness Pitkeathley, former chairwoman, APPG on carers
Baroness Gale, APPG on Parkinson’s
Drew Hendry, APPG on terminal illness
Baroness Greengross, APPGs on dementia and adult social care
Debbie Abrahams, APPG on dementia
Simon Hoare, APPG on multiple sclerosis
Dr Lisa Cameron, APPG on disability
Thank you to all of the Parliamentarians who attended and signed this letter, and to our member organisations who supported this event. We look forward to continuing to work with this group in the future to help secure long-term social care reform.
Hidden crisis in social care for working-age disabled adults
May 15, 2020
“There is a hidden crisis in social care for disabled adults risking serious harm for vulnerable people” says Charity Director representing over 70 organisations
– Social care at risk of becoming two-tier system, as working-age disabled adults in care homes are not being prioritised for coronavirus testing
– New CQC data appears to suggest almost twice the usual number of deaths in care homes that serve autistic people and people with a learning disability
– Care and Support Alliance fears that without urgent Government action, more disabled people could be at serious risk during the coronavirus outbreak
The Care and Support Alliance (CSA), an alliance of over 70 charities across the UK, are deeply concerned that disabled adults in social care are being forgotten during the coronavirus outbreak.
There is a hidden crisis in social care for disabled adults, because a number of the measures to tackle the coronavirus leaves many of the people we support out. The alliance is speaking out as it has become clear that despite the Government’s promise in late April to test all care home residents, disabled adults do not have equal access.
The Government has now developed a priority testing programme for older people (over 65s) and people with dementia. The CSA is concerned this is leading to a two-tier system, and is calling for everyone who needs social care, regardless of age, to be prioritised for testing. This means testing people who get support in their own homes, in supported living as well as in care homes – making sure that no one who needs support is left out.
The reality right now is that thousands could be left without crucial tests. Without urgent action, the CSA fears the virus will continue to spread quickly in settings for working-age people and that many more could die. Fears about this are particularly high following the publication of data from the Care Quality Commission yesterday, which indicates a 175% increase in unexpected deaths during the period 10 April – 8 May 2020 in places where people with learning disabilities and/or autism may live against the same period last year.
This underlines the urgent need to make sure everyone in social care can be immediately tested, if they start showing the symptoms of coronavirus.
Jackie O’Sullivan, Co-Chair at the CSA and Director of Communications at Mencap, said:
“It is clear there’s a hidden crisis in social care for disabled adults risking serious harm for vulnerable people. Every day, we hear from hundreds of disabled people and their families who can’t get tested and don’t have the right support to stay safe. And despite the Government effort on testing, this is not getting any better.
“Given the scale of the crisis we know is unfolding, we need to make sure everyone who needs a test gets one. We know this is crucial in stopping infections spiralling and preventing deaths.
“Emerging data from the CQC seems to show there are almost twice the usual number of deaths in care homes that service autistic people and people with a learning disability – a major warning sign. Without the right measures this will only get worse.
“Some of this stems from a fundamental lack of understanding about how the system works: 50% of the social care budget goes to working age adults – it’s not just ‘care homes’. The Government must tackle this now to avoid a catastrophe, and promise to roll out priority testing for all working-age disabled adults, no matter what type of social care support they get. The Government cannot wait any longer.”
Case study: A support worker who works for Mencap describes the challenges they have faced getting the disabled person they support tested.
Following guidance from Public Health England we were directed to our local authority to apply for testing. On applying for testing with them we were informed that testing was for staff or their family members only and not for the people that they supported.
This did not seem to be the correct guidance that was be given by the local authority so we decided to challenge this and go through the Government’s website to see if we could get the person we support tested. The guidance from the Government’s website was that if we got confirmation from NHS 111 that the person we support needed a test then a test would be provided. Confirmation from 111 was given and a test was booked.
The nearest test available was over 30 miles away, despite there being three test sites in the immediate location to the person we support. This posed serious transportation problems in getting to the site without breaking social distancing rules and putting the person we support and staff at more risk. We managed to overcome this by borrowing a vehicle that was configured in a way that allowed both travellers to meet the two-meter social distancing guidelines. This posed a serious risk to the person we support’s mental health and wellbeing. This makes us question if there was not a more suitable option available that was not given to us?
At the test site the person we support was informed that he would have to perform the test without help from his support worker. This made it very difficult for him, but he tried his best to follow the testers guidance and return a sample to them.
When the test results were sent back to the person we support the result was “inconclusive” and it was recommended that he have another test. For the second test we were able to obtain one of the previously unavailable “home tests”, and with support from his support worker he managed to complete the test and send it back. This test has now come back positive and he is again in self-isolation.
At every stage of this pandemic we have had to question the advice being given on the “helplines” and study every page and update on guidance to get the answers we have required.