Three lessons from lived experience

by Vidhya Alakeson

In 2014 I wrote a book about personal health budgets. I don’t consider myself any great expert in health and social care but I thought I knew something about how the system worked. I was quickly proved wrong when my eighty-year old Dad had a brain hemorrhage at the end of May which left him confused and unable to walk. It has to be said that the NHS saved his life. The challenges have all been in what followed.

Six weeks after surgery to remove the bleeding on his brain, my Dad came home, needing 24 hour care, unable to do much for himself. The experience of dealing with the NHS and social care as a family member has undeniably been a battle, although I don’t feel we have had any worse an experience than the average and we are definitely better informed than the average. I have worked in health policy and my sister is a doctor. But rather than write a familiar tale of woe, I was nudged to talk about how things should have been in the spirit of looking forward as part of Social Care Future. Here are three things that would have made a big difference.

The first is to have been fully involved as family members in my Dad’s care in hospital. He was there for six weeks but we were never involved in any physio or OT sessions, despite asking. Whenever staff did anything with him, we were pushed out and the curtain was drawn around his bed. Everyone knew he would eventually be discharged home but no one supported us to get to grips with how to take care of him. Suddenly having to care for someone who can barely walk and needs to be supported with every aspect of their life is incredibly daunting when you have no experience. To have been included as full partners in his care in hospital to prepare us for his return home would have made a huge difference and would have cost very little.

The second is to have had a single person to coordinate the myriad of health professionals who suddenly started turning up at my parents’ house. In the first few weeks after my Dad was discharged, we had visits from the dietician, the district nurse, physios from two different community teams, a nurse from the hospice at home team, nurses to take blood, someone from the incontinence service, on top of carers and my Dad’s GP. More often than not, people didn’t introduce themselves and it seemed down to us as the family to connect the dots and make sure things were a little bit joined up. For example, we had to ask the neuro physio to speak to the OT from a different team to make sure they were aware of what each other was doing. For my mum who was just getting to grips with her new reality as a full time carer, it was mind boggling. A named coordinator to help navigate the system and piece everything together would have reduced the stress a lot early on.

The third is money. Even after six weeks in hospital, we had to push to get my Dad home. He was deteriorating in hospital as far as we were concerned but there was no urgency to get him out. The cost of caring for him in hospital wasn’t an issue. But the cost of caring for him at home is.

We were lucky that he got some support on discharge but after three weeks, that stopped. Like a lot of people, my parents have too many savings to qualify for Local Authority support and we’re still waiting to see if we win the NHS Continuing Care lottery. The level of care my Dad needs means my parents’ savings wont stretch far. At £21 an hour, the waking night care he needs every night so that my seventy five year old Mum can rest and look after him in the day will cost my parents £1500 a week. My Dad’s been given a year to live so maybe they will just be financially ok but they have cut back on day time carers to try and save money, putting greater strain on my Mum.

This situation feels deeply unfair. Your likelihood of needing social care is as unpredictable as your likelihood of needing healthcare and yet the state provides large numbers of us no protection against that risk. A fairer deal on financial support feels essential.

If I’ve learnt nothing else from this experience it’s that putting people with lived experience at the heart of policy making and system design is essential. I’ve been humbled to be reminded that you can know a lot about policy and little about reality. However many clever brains apply themselves to the challenge of social care reform, without the insights of experience, we will fail.

Vidhya Alakeson is Chief Executive of Power to Change




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