Edel Harris
At Mencap, we have thousands of support workers working across the UK to help people with a learning disability live the lives they want to, as well as providing advice and support to many families who care for loved ones with a learning disability.
Support workers and family carers are truly some of society’s most inspiring people yet they are too often forgotten. It’s been heart-warming to see the increased recognition of the incredible work that all carers do, and most especially during the coronavirus crisis, during this year’s Carers Week.
As the mother of a son with a learning disability, I know first-hand the role that carers play in our society. The system of care is complex and fragile and, as the coronavirus crisis has shown, people depend on a wide variety of both formal and informal support. Some depend entirely on statutory support and others are cared for entirely by families. Many have a very complex blend involving family, friends, paid carers, respite and day services. Yet they’ve seen some of those disappear overnight – disrupting the fragile eco-system that enables people to carry on. People have coped amazingly during the last few weeks, but it is not sustainable in the long run and I am worried about the long term impact.
Over the last few weeks and months at Mencap, our support workers have gone above and beyond to continue supporting thousands of people with a learning disability in our services during the current crisis, doing everything to keep some of the most vulnerable people in our communities safe and happy. Every day they go out to work while the rest of us are being asked to stay at home.
Being a support worker can be a challenging job at the best of times, but this is even greater now. Many people with a learning disability, who are all unique individuals, find routine very important and comforting, and of course most routines have completely changed over the last few months. Yet our support workers have worked hard to create a sense of normality and community – holding discos in living rooms, building shops in garden sheds and burying time capsules in gardens. Whatever has happened, they have continued to face this tough time with so much resilience and skill.
It seems amazing that, just a few months ago, new immigration rules - before we’d even heard of coronavirus - described social care workers as “low skilled and low paid”. Who knew that a few weeks later we would, as a whole society, start to rethink what jobs have the most value - the people working in our NHS and our colleagues, not just at Mencap, but across the whole social care sector.
There are many different types of carers though – not only those who care as part of their profession but also those who care for loved ones. Many families caring for their children or siblings who have a learning disability have faced huge challenges with their support being reduced during the crisis. And many feel forgotten and alone as day services, respite activities, and other forms of support have stopped.
One family saw their child’s care cut completely during the coronavirus crisis – something that has compounded the isolation their daughter already experiences and the anxiety she is feeling about the loss of her usual routines. With more challenges to cope with than usual and less support, it’s been a really difficult time for family carers.
Yet, despite, the life-changing work they do, both family carers and social care workers often go unrecognised. We urgently need move investment in social care and to rethink the value that society places on both those working in the sector and the support available for carers caring for loved ones.
We are going to be changed by the coronavirus pandemic in enormous ways and I hope that, if there’s a silver lining to the pandemic, it will be that we remember the people who cared for others throughout this crisis. The health workers, social care workers and family carers who looked after the wellbeing of some of society’s most vulnerable people.
When life returns to normal I’m sure we’ll all take a big sigh of relief, get back to being out in communities and enjoying time with our loved ones, but I do hope it’s given people an opportunity to really think about what is important in life and what we want our ‘new normal’ to be in the future. Every week during lockdown we clapped for our carers and, although this ritual has come to an end, the sentiment must not. Society must continue to value the work carers are always doing, even when the crisis has passed, and we must all collectively work to ensure social care receives the recognition and investment that it needs to look after both those who need care, and the carers who do so much for society.