The NHS saved me, then abandoned me – the government must invest in proper rehab

Community care is just as important as hospital treatment – as I discovered after a stroke

People like me with long-term health conditions are currently being abandoned after diagnosis or discharge, due to inadequate community care. I lost my career and my family – and became suicidal – as a result.

My life changed on 8 September 2011, at the age of 46. I was training for the London Marathon and asked my daughter to exercise with me in our cellar. As I went downstairs, I felt a whoosh in my head and collapsed. I had suffered a massive subarachnoid brain haemorrhage and stroke from a ruptured giant aneurysm, and my survival chances were less than 10%. My husband told our daughters I would probably be dead by morning.

After brain surgery, I was in a coma for nearly two weeks. I saw, felt and heard nothing. I woke with no hair and a nine-inch scar, 52 staples, three bolts and two titanium clips holding my skull together and sealing the aneurysms. No one sat next to me to say: “We know you have issues with this at the moment, but we’re going to do whatever we can to get you well and look after you”.

Instead, I was transferred to a local respiratory ward, which didn’t know what to do with me. When I went home, my discharge summary didn’t even mention that I was paralysed, mostly blind, or that I’d had a stroke and brain haemorrhage.

Once I was home, I was seen only three times by an NHS community care team before being left to fend for myself. I was suffering from chronic fatigue, chronic pain, bladder dysfunction and depression. I had fallen through the cracks.

New research by an alliance fighting for better community rehabilitation shows that almost half of people who did not receive sufficient rehab felt “abandoned by the system”. But with proper NHS funding by prioritising community rehabilitation, essential at-home care for patients can be provided. It is just as important as hospital treatment received.

I felt that I had died with the stroke, that everything I had fought for was lost. I came from a council house with no money and went to five different schools by the age of 11. I was badly bullied and knew I wanted more for my future. I was the first person in my family to go to university and became a successful barrister. I had a wonderful relationship with my daughters and was at home each evening to cook tea, do bathtimes, help with homework and play. I was the epitome of a working mum who “had it all”.

But after the stroke, the NHS didn’t help me to put my life back together. The NHS has become so good at saving and prolonging our lives, but those lives then need to be worth living. In 2012 after a major upset at home, I went and sat on the beach, picked up stones and started hitting my head with them, because my stupid brain was causing me all this upset. I just wanted it over with.

For four years after the stroke, I tried to get back to the job I loved and to that familiar part of me that was happy, confident and successful. It didn’t work. I had a mental breakdown an was suicidal.

I felt like a failure: purpose-less, useless, desperately depressed, and unemployed. The fit, healthy 46-year-old was gone, and I was chronically ill and permanently disabled in my 50s.

I’m not alone in feeling like this. Recent research shows stark differences between the experiences of those who did receive rehabilitation, and those who missed out. Of those that received insufficient care, 40 per cent said their mental health had worsened – while only nine per cent of those who had sufficient care suffered a negative impact on their mental health.

In time, I taught myself to walk again. I wanted to get well for my two daughters. I channelled the spirit of that determined teenager who battled the odds to become a lawyer, and sought help. I paid for a private brain injury case manager who knew how we could work together to improve my life and health, and she helped me to get me as well as the massive stroke would permit. But almost half of people with neurological conditions don’t have access to community rehabilitation.

I know now that if I had had the right care from the start, I would have been able to get back to work, and would not have endured years of often thinking it would be better to be dead than carry on. Everyone should have access to high-quality rehabilitation from the NHS, otherwise there are devastating consequences for patients like me. I spent thousands of pounds on private care for services which the NHS can and does provide, but failed to.

I will never return to my judicial career, but I have found new purpose as a charity volunteer, patient advocate and research contributor. While I have irretrievably lost so much that was precious to me, I now have hope for the future.

My experience shows that huge changes are needed to address years of neglect and underfunding in the health service. A number of cross-party MPs pledged their support for improved community rehabilitation at a parliamentary event last week – but they must go further.

Action must be taken to ensure what happened to me does not become the norm. We need to abolish the “postcode lottery” within community rehabilitation – everyone should get the rehab they deserve to live life to the full