HEROES AND VILLANS CARING FOR A LOVED ONE IN 2018

Lynn Williams supports her husband Derek who has lived with a T2 spinal for over 55 years. Here she talks about their life and the wider challenges facing Scotland’s 750,000 unpaid carers.

Writing about your life caring for a loved one isn’t easy. It’s incredibly difficult to lay bare the struggles you face as a family and to outline how hard the person you love finds life every day. I believe that sharing our experiences of the Social Security system, the NHS and other key services can help politicians and decision makers understand our lives and hopefully help make things easier for our families.

Derek and I have been married for almost 25 years. Whilst I always had a caring role, I would say that the last 10 years or so have meant that he is more dependent on me for everyday support.

Derek has lived with a T2 complete lesion traumatic injury for over 50 years. With this comes a range of complex and sometimes scary conditions: dysreflexia, autonomic neuropathy and unstable blood pressure, poor circulation, severe osteoarthritis and osteoporosis. We only discovered the latter condition after Derek fractured his tibia in a chair to car transfer in 2014. Waiting in A & E for x-ray results, it became clear that my husband was dysreflexic. It took over an hour for someone to bring pain relief despite my frequent requests and explanations about the risks.

When you deal with each challenge, you often don’t truly see how tough things have become. A letter from a Spinal Unit Consultant to support Derek’s DLA to PIP transfer in 2016 brought home the depth of complexity of his daily needs.

When you have a hospital appointment almost very week, surgery and constant GP visits, paid work becomes almost impossible. So, over two years ago I left a well paid job to be at home full time. We lost over half of our income overnight, replaced only by Carers Allowance, then just £62.10 a week. More importantly our income became more dependent on the benefits system. An incredibly stressful DLA to PIP transfer and wider rhetoric about benefits claimants being scroungers affected us both.

Providing unpaid care to someone you love is often portrayed as “heroic”. We are described as wonderful, warm human beings, and politicians are always (apparently) incredibly grateful for what we do. Over 700,000 of us provide some £13bn of care per year – roughly equivalent to the whole NHS budget.

Caring isn’t easy. It can feel like your heart is being ripped in two. It’s about being strong when you barely have the energy to do anything.

Research by Carers UK consistently highlights the negative impact of unpaid care on health and wellbeing. It shows that unpaid carers face poverty, a situation made worse by the lack of financial support at the end of the caring journey and the deeply flawed nature of Carers Allowance.

For the many hundreds of families affected by spinal injury and neurological damage every year, this is the world they face. One which still does not understand the challenges of spinal injury.

In Scotland there is nowhere near enough fully accessible housing and access to adaptations and equipment is becoming more difficult. Social care support is costly; our communities and infrastructure are not wheelchair friendly. Bureaucratic barriers and inflexibility, a benefits system loaded against claimants, inaccessible transport and badly planned services (parking easily at any hospital?) are the villains of the piece.

Yet amongst these battles the lifetime support that families dealing with spinal injury get from the Spinal Unit in Glasgow is an invaluable lifeline. It has supported us in very dark, difficult times. Moreover specialist nurses, our local GP and community nurses in South Glasgow have helped us practically and with respect, dignity and understanding. In the midst of the challenges we face, the heroes are those who have helped us get over the next hurdle or health challenge.

These services are never fully recognised for the outcomes they achieve with families. We need to get better at highlighting the heroes in the harsh world of caring and spinal injury.

BY LYNN WILLIAMS