CSA Co-Chair Jackie O’Sullivan: Covid has given us an opportunity to change social care

There’s a point in the crisis cycle where your response becomes the ‘new normal’, adrenaline subsides and, whilst you feel absolutely knackered, you are able to reflect on what has passed. For me, this happened last week when I read last week’s Reuters investigation with a growing sense of anger.  How on earth have we got to this?   Up until this point, I hadn’t had time to get angry – I’d been too busy supporting Mencap’s effort to respond to the crisis:  PPE, care act and mental capacity act easements, access to food, support worker recruitment, furloughing… and how to pay for it all with donations falling and many Local Authorities not paying up? 

But now, I’m able to reflect – and there are some pretty ugly truths emerging. How did we end up discharging people infected with Covid into care homes? Almost a dozen people will have been involved in that process – from the doctor signing the discharge paper to the ambulance team transporting them. And almost everyone in that process would know enough about Covid to know what would happen if you put someone with the disease in a building where other vulnerable people live. They are all caring, socially conscious people – so how did that happen?

And the ugliness wasn’t just apparent there. NICE published a Clinical Frailty Scale which seems to penalise people with a learning disability simply because they might need extra support with their shopping. To their credit, they rectified this pretty quickly, but then we saw a spate of letters and phone calls from GPs advising people with a learning disability to agree to a Do Not Attempt Resuscitation Notice. Some even warned that if they went to hospital they wouldn’t be prioritised for a ventilator and risked dying alone – so wouldn’t it be better if they stayed at home to die? One lady agreed to sign, because she didn’t want a stranger giving her ‘mouth to mouth’ (which was how the GP explained it to her) in case she caught coronavirus.       

Ministers and officials have been horrified by this. They have issued strongly worded letters. I’m fairly sure that there isn’t a smoking gun held by someone in Whitehall who has been ordering this to happen. I think it’s more insidious than this – it’s cultural – and we’re all to blame. 

We bought into the idea that we must protect the NHS at all costs. And we have been so hell bent on this that we have jeopardised the very people the NHS exists to protect. Ironically, many of them in that post-war generation which created it in the first place. Did we do this because, deep down, we fear that if we catch Covid and need treatment or a ventilator there might not be one available?   Have we devolved difficult decisions about who does and doesn’t deserve treatment to an institution, knowing that with it would come a risk of bias and prejudice seeping into processes and becoming normalised? 

Although the ultimate victims of this bias are older people and disabled people, the prejudice really exists towards social care, its workers and its users. As Reuters exposed so clearly, the system is hardwired to prioritise hospitals; care homes are at the very bottom of the pile. We’ve become so used to it, we failed to be as angry as we should have been. Just look at PPE – the NHS requisitioned supplies which were intended for social care settings and there were public outcries when we nearly ran out of gowns.  Contrast this with this situation in care settings where providers are still having to scramble to source supplies which are often overpriced and inadequate (Mencap has spent over £1million on PPE is having to fundraise to cover it). We experienced a similar situation with testing which revealed a lack of understanding within Government about what social care actually is – ‘it’s not just care homes’. Care workers are paid poorly and do not enjoy parity of esteem with their NHS colleagues (just google nurses and then care workers – nurses are angels; support workers are ‘low skilled’). The system of social care is fragmented and fragile – the NHS is strong and has a powerful voice. NHS treatment is ‘free’ at the point of need; social care is not.   

It’s easy to say now that the system needs to change and mean it, but the focus will soon shift to lockdown easements, vaccines and the economy. The question is, how can we make sure we get that change? Covid has given us an opportunity. Whilst politicians are starting to say the right thing in terms of valuing the incredible work underpaid care workers do, the much delayed cross party talks on long term funding of social care have no start date, and the funding crisis remains unaddressed. Politicians from all parties owe it to care staff and the people they support to act quickly and decisively to give the sector the long-term funding it needs, and to professionalise and properly reward its workforce.

Just as the NHS was our gift from the post war generation, can we bequeath an excellent system of social care to future generations?

Jackie O’Sullivan is Executive Director of Communications at Mencap and Co-Chair of the Care and Support Alliance

The next Prime Minister must invest in social care

For anyone aspiring to be the next Prime Minister, we and the Care and Support Alliance think today’s (29th May and 5th June) two-part BBC Panorama’s ‘Crisis in Care’ is essential viewing.

The first programme follows four families in Somerset who need care, and staff at their council who face impossible dilemmas over the allocation of inadequate resources to help them and many others, following years of austerity and rising demand.

We meet a mother of young children who is chronically ill with arthritis, for whom the key question is whether the council can afford to sustain her at home or whether, horrifically, the only option is a residential home, away from those she loves and who love her. And a man aged sixty with Downs Syndrome, cared for by his mother all his life, but she has now died and he is increasingly unwell. His family find a suitable care home but then there is stalemate as it costs more than the council feels it can afford.

We see families buckling under the strain of caring, with support whittled away as services close due to budget cuts. And we are prompted to consider what it must be like working in this environment – forced to reconcile a commitment to acting in people’s best interests with options that are patently inadequate but all the council has the money to pay for.   

This appalling situation, which is not just happening in Somerset but all around the country, will face the next Prime Minister, whoever they may be. Councils up and down the country are being left to carry the can – local fall guys for failed leadership on the part of central Government. Theresa May’s Government promised a Green Paper two years ago but has since delayed it an incredible seven times.

Meanwhile the Local Government Association has produced its own widely praised Green Paper and just this month we have seen three new policy reports from think tanks spanning Left and Right. All say much more investment is needed, plus some form of risk pooling across our society – a view the Care and Support Alliance shares. This emerging consensus among diverse opinion formers is potentially important.

A new Prime Minister needs to take note of these reports and do what their predecessors have failed to do: inject serious investment into adult social care, which faces a £3.6 billon funding gap by 2025 just to stand still, and develop a long term plan so today’s young people need not experience the misery evidenced in today’s Panorama if they come to need care.

It is within the gift of our new Prime Minister to put social care on the path to a sustainable future. The question for us is whether any of the candidates have what it takes to do so.           

Caroline Abrahams, Charity Director at Age UK, Emily Holzhausen, Director of Policy and Public Affairs at Carers UK and Oonagh Smyth, Executive Director of Strategy and Influence at Mencap are the co-chairs of the Care and Support Alliance and represent the three groups the alliance represents, carers, older people and working-age disabled adults.

The Care and Support Alliance (CSA) – is a coalition of more than 70 of the country’s leading charities who are calling for a properly funded care system.