Covid-19: An older person caring for a younger family member

By Dame Philippa Russell, Vice-President, Carers UK - and carer for her son Simon

The Government’s guidance for care homes and supported living, on living with Coronavirus, cannot cover the large group of older family carers – like myself - who have embraced personalisation, independent living and ‘ordinary lives’ for our adult children with learning disability/autism. The war against the Coronavirus grows fiercer by the day and we are terrified by the prospect of enforced ‘house arrest’ for maybe four months or more. 

SCIE: Coronavirus (COVID-19) advice for social care

Of course, older people like myself are more vulnerable to any virus. But many of us are fit, healthy and we are still the lynchpins of our adult children’s lives. Sadly, we live in an ageist society, where maturity is all too often confused with incapacity and ‘burden’. Like many in my generation, I have lived through epidemics and I fully understand the importance of preventing transmission and of course the judicious use of social isolation. 

But ‘house arrest’?  Simon, my son, values his own home, he loves to get out and about in Chichester. But he can’t Skype (he can’t read or write or use any IT equipment). He finds telephones difficult and he needs active support and companionship with daily activities. If I am ‘locked in’, what happens in his empty hours? 

There are 168 hours in a week – we are lucky because Simon has a fantastic support worker for 30 of those hours. In a normal week he would also have around 25-30 hours of supported activities in the local community. But those activities are all shut down by coronavirus.  So what about the remaining 138 empty hours?  

Like many family carers, I am terrified of the prospect of being locked out of Simon’s life with no reliable replacement.  Unfortunately there is no ‘remote access’ for family carers like myself or those we care for. For us, care and support are ‘face to face’, often a marathon in the best of times. 

For me, the present situation underlines the vulnerability of the huge progress made in the last couple of decades (and epitomised in the Care Act) around personalisation and good lives in the community. Looking at Simon’s artworks, at his garden and the home he loves, I see the vulnerability of our health and social care sectors and I dream of the ‘re-imagining’ of social care that has been promised so  often but remains a dread.

As an anxious family carer, I am worried by the implications of the Government’s Emergency Powers. With no vote (and thereby no time for real debate) local authorities will be permitted to reduce their normal standards of care and ‘prioritise’ and the NHS will be allowed to discharge elderly patients early from hospital. In the war zone we all live in, this may make common sense. But who decides what is fair and equitable  – and will people like my son, not living in a group setting and with one ‘older’ parent still alive but maybe put in solitary confinement, be remembered and valued in the distribution of scarce resources?   

So what is the solution?  My family came from New Zealand in the 1940s and we were promptly bombed out of our house. There is something very salutary about being a ‘child of the Blitz’ because when you lose everything, you have no choice but to be solution focused!  We haven’t lost everything. We have the Care Act, we have the NHS Long Term Plan and we have committed and creative family carers and of course our amazing care workforce – 1.34 million people, often undervalued but incredibly skilled, I couldn’t have coped with my husband’s illness and Simon’s disability without the ‘co-production’ we built together.  Surely now is the time to give ‘parity of esteem’ to health AND social services as both being inextricably linked in ensuring good lives for vulnerable people?

Talking about ‘co-production’, and thinking back to the Blitz and Churchill’s dictum that ‘you need people’s hearts and minds to win a war’, maybe we could start by actively engaging family carers, disabled people and their organisations in the campaign against the Coronavirus?  Most Local Authorities have resilience committees of some kind – but are they listening to people like me, to our local networks and organisations?  In hard times, do they even know that we ‘hidden carers’ actually exist?  Today, after another alarming news programme on his TV, my son told me he couldn’t sleep at night because he was scared I might get ill or die in the night – and who would tell him?   ‘Social isolation’ may minimise infection, but it threatens the quality of our lives (and any care and support needs) where relationships are crucial. 

If the Coronavirus crisis has one good outcome, I hope that at last it will trigger the long awaited public debate about what we mean by 2lst century social care. Like the NHS it is now so much more than a safety net and so much more about enabling citizens like my son to have a good life.