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24 April 2019


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Twenty-seven years ago, my husband Forbes suffered a devastating brain stem stroke which left him totally paralysed and unable to speak. He was 49 years old.

For such a brilliant man, at the peak of his career, to be unable to communicate or move any part of his body is a situation few of us can even begin to imagine. He could see, hear and understand everything, but had no way of communicating. After 16 months in hospital, nine of them in a rehabilitation unit, the specially adapted extension to our house was finished and Forbes was able to come home to where he belonged with his family.

Although we were delighted to have Forbes home, it was obvious I would need help with his care from a live-in carer, along with top-up care in the mornings and evenings as it took two people to do everything with him. But from the beginning it had been made clear to us that we would not qualify for financial help with care, or building the extension, or much of the equipment he needed. His company paid for a pressure relief mattress, which lasted 21 years; his colleagues also fundraised for his lightwriter (a text-to-speech device) and first computer. We paid for his powered wheelchair and a special bath. None of these things are luxuries, without them life would have been even more difficult.

For 23 years we paid all the care costs and bought much of the equipment he needed. Then, in view of Forbes’ deteriorating health, someone suggested we should apply for Continuing Healthcare (CHC) funding. This proved to be a difficult and dispiriting process, as we were forced to look at everything from a negative viewpoint, concentrating on the things my husband can’t do, which is the opposite to how we try to live our lives. Nevertheless, we persevered and eventually our application for CHC funding was approved.

What a turning point that proved to be. Not only were we getting financial help to pay for my husband’s care, we were able to keep on the evening carers I had organised privately. They’d all been with us for years and continuity of care is so important for people with long-term health needs.

That was four years ago, and we’ve been so grateful, not just for the financial help but more recently for the emotional support too. Last July, I was diagnosed with a heart problem that needed bypass surgery and months of recuperation, therefore preventing me from doing any manual handling which is such a big part of caring for my husband.

My main concern was who would take my place as one of my husband’s main carers. I contacted the Continuing Healthcare team at Bedfordshire CCG and was told I could apply for a personal health budget (PHB), which would cover the cost of a second live-in carer until I had fully recovered from my operation. I discussed my needs with the team and under their guidance, produced a personal care plan and agreed the budget. The budget was reviewed by the PHB panel and my application was approved. 

Over the next few months I had a quadruple bypass and suffered a number complications, but with the personal health budget in place I didn’t have the anxiety of worrying about my husband. Whenever I tried to forecast when we would be able to do without the second live-in carer, I was told by the CHC team, “Just keep them in place until you are sure you will cope.”

Knowing we didn’t have to worry about my husband’s care was such a relief for me and our two children.

Having recovered from my operation we returned to having one live-in carer six days a week and our top-up care morning and evening. Even so, Forbes is 76 and needing more help with absolutely everything. Whereas previously I was able to take him out on my own, I now need a carer to come with us. I discussed this with the CHC team and they increased my personal health budget to pay for a live-in carer seven days a week, which has reduced the load on me.

Twenty-seven years ago my husband was not expected to live through the night. He did and has been at the centre of his family ever since, retaining his incredible sense of humour, having several articles published, seeing both our children through university and establish careers, and now enjoying the company of four lively granddaughters. We never look too far into the future, trying instead to make the most of every day. We certainly never dreamt all those years ago he would still be at the centre of our lives.

Life is still not easy but it is easier thanks to the support of the CHC team and an NHS personal health budget that allows us to design a programme of care that exactly meets my husband’s needs.

And for that we could not be more grateful.

Anne.

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