Dear Prime Minster,
I’m sure you have been told about the petitions and the protests. I’m sure you will have been driven past the billboards begging you to think again. You must know the criticisms of your health bill and I’m certain you’ll have learnt your responses by heart. But I ask you to put rhetoric and bravado to one side for a moment and read this letter with an open mind.
At some point in your life you must have experienced the terror and powerlessness ill health can thrust upon you. For many people healthcare isn’t an occasional concern, it’s an ongoing issue that requires a complex network of support to lift them out of pain and give them hope for the future.
I have Tourettes Syndrome and in the past few years the increasing severity of my condition has shaken my life and my body. The web of services that have given me strong and consistent support looks fragile and vulnerable in the face of your bill. I’m scared by your proposals and here’s why:
When my hands bruised and bloodied my chest from thousands of involuntary punches, my GP improvised and provided dressings to prevent my skin breaking any further. When my leg tics made my mobility so poor I could no longer climb the stairs to my flat, she wrote a letter to social services to get more help for me. When I’ve felt desperate and confused she’s listened and helped me unravel my options and my thoughts. She knows me and gives me advice based only on my needs.
Under the bill will she be free to use her own judgement and take this pragmatic approach? I can’t see how, in a system that requires interventions to be measured against financially quantifiable targets. How will she maintain an overview of my care with ever-increasing pressures put upon her by commissioning? Realistically, how can GPs spend the same amount of time listening to and caring for their patients with these added responsibilities?
Tourettes is a changeable condition and regular appointments with my consultant are vital for keeping on top of the evolving challenges it presents. My consultant is a specialist in Tourettes based at a neurological hospital in London. In addition to the direct care she provides, the research she undertakes is crucial to expanding understanding and treatments. Under the bill services and specialisms like this are particularly vulnerable to neglect and degradation.
My worry is that in a system governed by profit-driven private companies, specialist non-profitable services and research will be sidelined. How does your plan ensure less common conditions still receive the attention and investment they clearly need?
A year ago my ability to walk suddenly deteriorated. For a while I fought on, unwilling to acknowledge the impact my leg tics were having on my mobility. An injury to my ankle soon forced me to face the reality and risk of my situation. It also meant that after the immediate treatment I was promptly referred to the NHS’s physiotherapy, orthotics and wheelchair services. These teams worked together to help me regain some independence. Without the supportive splints, specialist shoes and a customised wheelchair, I would have inevitably done further damage to my body and required more costly treatment.
As budgets get smaller and services are divided up and handed over to the lowest bidder, how can care provision continue to be integrated? Surely each service will have to protect its own pot of money? Instead of a cooperative network of specialist disciplines won’t this bill inevitably create warring factions with patients caught in the crossfire?
Last October my life was rocked once again by another change in my condition. I woke one Friday to an explosive bout of debilitating tics. During this ‘fit’ I couldn’t speak or control my body. It lasted for forty minutes and was to be the first of many such episodes I had that day. After a full day of fits I was struggling, exhausted and in pain. Thankfully it passed, but late the following night I started to fit again, moving constantly with great force.
My friend fought to prevent me from seriously injuring myself, holding my head to stop it banging on the floor while his girlfriend held my arms and legs; but the fit showed no sign of ceasing. Worried and helpless my friends called an ambulance. I remember feeling an overwhelming sense of relief when I knew assistance was on its way.
The ambulance crew quickly assessed me and took me to hospital. After three hours of fitting the emergency team got my body back under control. These fits have continued many times a day, everyday since. That first weekend was terrifying for me and for those who care for me. But we all knew that when we needed help it would come. The decision we made to call an ambulance was based only on my need, not on whether I had the money to pay for it.
Under the bill, the healthcare system you’re creating puts this basic principle at risk. A report by the US Government Accountability Office showed that the average cost of a ground ambulance trip to hospital in America is $415 (£265) but that it could be as much as $1218 (£777). Some will argue health insurance will cover it. However that isn’t working in the US where one in six Americans – 50.7 million people – don’t have insurance at all. And even if you do have cover, some companies will only pay for your ambulance if you’re subsequently admitted to hospital.
I’ve recently been refused other types of insurance because of my disability and I think it’s unlikely any medical insurance company would be prepared to cover me, for the same reasons. What would you suggest I do? Perhaps sick people being bundled into cars and driven to A&E by terrified relatives is what you had in mind when you talked about the ‘Big Society.’
Your argument for the changes you propose is that the current system is not effective or efficient. Not only is this not reflected by personal experience, it doesn’t stand up to scrutiny either.
According to the Organisation for Economic Cooperation and Development (OECD) and the Commonwealth Fund International Health Policy survey the US spends twice as much on healthcare per person as the UK but their satisfaction rates are lower. This doesn’t suggest to me that privatisation saves money or improves quality at all.
I’ve received amazing care from the NHS. The situations I’ve described only begin to describe the numerous ways I’ve been helped. The NHS provides me with care at times of crisis and the ongoing support I need to stay healthy and happy. It also means I can go on with my full-time job..
I have faith in this system because I know it works. As my own health’s deteriorated it’s the NHS that’s held my head above water and while I’ve sat in its waiting rooms, I’ve seen it do the same for countless others.
You recently made your feelings about people with Tourettes clear; despite this I’d welcome the opportunity to sit opposite you and have a thoughtful discussion about the impact of your proposals for a healthcare system that checks your bank balance before it checks your pulse.