WE CARE CAMPAIGN – WRITTEN EVIDENCE (ASC0032)
We Care Campaign is an award-winning grassroots volunteer led campaign, run by carers for carers. It was created in May 2018 to amplify the voices of unpaid carers to decision makers and place unpaid carers at the heart of decisions. We Care covers the UK.
Within this submission we look at the invisibility of unpaid carers within the adult social care system. We consider and make recommendations to members of the Committee on:
The invisibility of adult social care and its consequences
“I feel invisible, undervalued and forgotten by government and society.”
Amanda, unpaid carer, Shropshire We Care Campaign
I’ve personally been caring for members of my own family since I was 5. That’s 46 years of caring for 6 family members in total and supporting 2 currently. I only identified as a carer in the last 8 years, so have missed out on years of support and benefits.
I set up We Care Campaign 4 years ago because I felt that carers voices were going unheard. I felt that charities weren’t speaking with my voice. I knew carers wanted to campaign on issues important to them, they just needed some help and encouragement to do so.
Carers have long felt invisible to society, organisations, business, and government. It’s been going on for many decades. Whilst we agree that carers are invisible, we feel equally that we are ignored. It is important we recognise that invisibility allows deniability. It is far too easy to say “we didn’t know” when talking about the invisibility of carers. To become visible, as unpaid carers, we have had to take the lead and not wait for others to lead in our name.
“I’ve been waiting 40 years for someone to take the lead (on carer issues). [It feels like] I’ve been waiting for buses that never come.”
Unpaid carer campaigner, We Care Campaign.
Why are carers invisible?
Current structures of engagement by politicians and policy makers favour charities and think tanks and not individual carers. Paid staff are therefore commenting on carers issues. Large organisations and think tanks state policy on behalf of carers, not with carers. It is only through involving the lived experience of carers that our issues will be addressed, and invisibility removed.
It is inexplicable that unpaid carers still do not have our own strategy when we do so much for society in terms of economic value and in sticking together both the health and social care systems. This lack of a national focus on carers means carers do not see themselves as carers. The default is that carers must self-identify as carers in order to access support. The onus is put on us to recognise that we have become carers. Sometimes becoming a carer is a responsibility gained suddenly – a life-changing illness or accident affecting a loved one. More often than not, it is a responsibility that gradually creeps up over months and years as our loved one can no longer safely cope without our support. Helping out with the washing and cleaning becomes making every meal. Phoning for a chat becomes a visit every evening to make sure they are in bed safe. Driving them to the doctors becomes being present at every appointment and filling in the reams of paperwork. We can struggle to identify that we are now have this role as a carer as well as our role as husband, daughter, sister, or friend. Self-identification means many carers go without support, benefits they are entitled to and knowing their rights.
Lack of parity of funding between the NHS and Social Care provision leads to the “poorer cousin” social care. Carers themselves are invisible within the social care system, despite providing 90% of all social care. They are the “poorer cousins twice removed.” A lack of funding ensures we stay invisible at all levels of the system.
Poverty makes carers invisible. Without adequate resources and support, carers are pushed back into their homes and are not able to be part of society. Caring pushes many into poverty and our current benefits system has failed to keep up with societal changes in the job market, cost of living and the fact that family carers are giving up their economic stability to care for loved ones in the absence of any other care solution.
Key recommendations include:
Invisibility within organisations such as the NHS
Carers are not seen as partner providers by the NHS. When parent carers and those caring for an adult with a disability arrive in hospital, to support the admission of their cared for people, our experiences can be very different.
As a campaign we have collected qualitative information from parent carers across 4 nations which show how even the basic human rights of an individual are forgotten. Carers are made to feel unwelcome. This predates Covid. We Care have collected the experiences of carers and include these quotes here. These experiences make salutary reading.
Whilst carers attend acute settings, A & E, GP surgeries, community appointments, rarely is the carer acknowledged, nor is the person who is attending asked who is helping support them. A simple additional question added to a consultation or appointment would identify individuals as carers and could be signposted to local support organisations. Due to the scale of healthcare budgets compared to social care budgets, this responsibility to identify carers would be most efficiently and effectively delivered by the NHS. It also should move beyond being a GP responsibility and be a responsibility on the whole of the NHS.
Better support for unpaid carers
Carers Allowance is simply not fit for purpose. Carers tell us that they feel undervalued and say that they are doing a job of work. They see Carers Allowance as pay they receive for this role, and it is inadequate.
We need to address why carers in different nations of the UK, are now receiving differing levels of payments. A carers supplement given to those on Carers Allowance, needs to extend to all carers in the UK. Currently this is only available to carers in Scotland and recently Wales. Currently carers in Scotland receive over £600 more a year.
The Care Act is failing carers. Carers do not understand why they must register with carers support organisations. Individual areas farm out carers needs assessments to multiple organisations. Carers have to navigate this first before they ask for a carers needs assessment. Too few receive one and many are only signposted to services which may or may not support them. They need a clear carers pathway and a single point of contact.
Many do not understand that they are caring in the first place so that they do not understand what their rights are and therefore do not ask for a carer needs assessment. The tendering of carers support services to organisations every few years mean that these organisations are in a state of flux. There is no stability and continuity for carers.
Carers Assessment provision needs to be monitored. Currently there are too few carers’ assessments given to carers. Carers do not know they are entitled to one, nor their value. When they do receive one, they need to be individualised. Also, the standard of carers assessments needs to be addressed. They need to be more than a chat and any use of online support for carers needs to be more involved than simply signposting to a Facebook group of peer support.
We need more flexible working legislation, the Employment Bill. The Flex Appeal is a campaign where individual mothers and allies have banded together to ask for more flexible working conditions. Flexible working conditions would equally benefit those juggling paid work with a caring role.
We need to monitor and evaluate the Care Act – within Wales there is the Track the Act which looks to measure how well the Social Services and Well-being (Wales) Act 2014 is doing. In Northern Ireland there is legislative lag, so they are not even at this point as there is no Care Act. In England we do not evaluate or monitor the Care Act, nor routinely measure the numbers of carers who receive a carer needs assessment.
We have little research on caring and its impact. There are few longitudinal studies of the collective impact of caring on someone’s life and we need more research to be commissioned. As women are more likely to be carers, we need to look at this in terms of gendered impact.
Carers need a single point of contact and a clear carer pathway (which would be a recommendation of any National Carers Strategy) to help navigate complex systems
Implementing co-production with carers
Carers Trust recently produced a survey of over 1,000 carers which showed 91% of carers felt that they were ignored by government.
At We Care we believe that any carer can participate, have their say, and be heard within policy making, providing that there is a programme of support and time to build their confidence and skills to do so. Carers will see and know where policies will not work for them. The barriers to engagement and participation by carers are multiple and include:
For a grassroots organisation, with lived experience at its heart, we have had to overcome many obstacles to take a lead and amplify the voices of carers.
Firstly, to campaign at any level costs money, we use free digital solutions to run the growing infrastructure we rely on as a campaign. These include a website, design software and digital online meeting software. Whilst it is possible to start with nothing, grassroots organisations need to be supported to grow and develop through partnerships with larger organisations and charities.
We have formed coalitions with larger charities who have provided us with grants and have shared their influence and power with us, which is essentially a leg up. Our work with Oxfam GB is a great example of this and shows what is possible. Oxfam have funded a film to increase our reach with unpaid carers due out during Carers Week 2022 and helped fund some of our infrastructure, including our website. Oxfam have enabled us to grow and given us the opportunities to think about where we go next as a community interest group.
We have used digital solutions as an enabler to allow us to meet with one another, allowing often isolated carers to meet other carers for the first time. We have been able to attend governmental meetings easily and contribute via online meetings and have connected with organisations and charities we wouldn’t have had been able to meet. Offline activism is important to us but for carers online activism removes many of our barriers and invisibility. We use digital engagement as an enabler for isolated and dispersed carers to come together.
We have also used craftivism as a way for carers to engage with their MPs in a powerful way. We created a sticking plaster kit which included all the materials, thread, and needle as well as instructions to create a handmade felt plaster. Carers stitched these because we feel like the sticking plasters holding the health and social care schemes together. Once made, carers wrote a handwritten letter to their MPs asking for a National Carers Strategy and including their own carer asks. We posted over 200 kits to carers and supporters to send to their political decision makers across the UK. We used social media to post photos of the finished plasters, posting the letters and receiving the replies. It was a creative and impactful way of campaigning whilst we were physically apart due to the pandemic. Funding for the craftivism kits came through fundraising and a grant from Campaign Bootcamp.
We Care was born out of frustration. It was also born out of the frustration that carers charities were not pushing hard enough on the issues that mattered to us. We have since its inception, involved carers in all aspects of our organisation. Carers run our core team; we have carers who run their own campaigns where we run a supported network model. Carers can then run campaigns on issues important to them. This has increased recently as We Care continues to evolve and devolve across the nations.
Trying to find grants has been particularly difficult as we are not providing traditional support for carers in one sense. We are campaigning and helping carers to campaign. This precludes many applications to grant funding bodies. Recently we have received a grant from Oxfam which has enabled us to scale our ambitions.
We Care has been waiting for charities and other organisations to catch up to it, in terms of placing lived experience at the heart of campaigns. With this we had benefited from coalitions on poverty, such as #KeepTheLifeline. But too often traditional charities do not include us in any call. We need to go beyond carer charities and join up with our cared for colleagues all campaigning for more visibility.
As carers, we have led in the absence of others leading for us. Give us the chance to make the change we need next by involving us all fully.
The recent House of Lords Digital Inquiry accepted poems, music, art all to enable more people to participate and add their voice. These more flexible approaches allow more people who would not normally engage in an inquiry process to include their voice.
26 May 2022