Debbie and Brian’s story

Debbie benefited from a personal health budget to organise flexible nursing care at her home after her father, Brian, became immobile and needed 24/7 care after a series of strokes.

My dad, Brian, suffered a series of mini strokes in 2006, when aged 76. Prior to these he had two major strokes – one in

1992, the other in 2000. Diagnosed with vascular dementia, resulting from the stroke damage, dad was unable to return to living alone in his own home, and by September 2008 he was immobile.

My dad could not tolerate the prospect of spending the remainder of his life in a nursing home, so we agreed he would come to live with me and my two sons. This was despite the fact that I was recovering from breast cancer surgery. We were increasingly struggling to care for all of dad’s needs during his first year with us as he became more immobile.

“Dad was totally reliant on us and others for his physical care“

Before a personal health budget became an option for dad, he received a care package from the primary care trust. Two carers made home visits four times per day, and one visit per night. Dad also received a sitting service twice a week from the St. John’s ‘hospice at home’ team.

But by September 2009 dad’s dementia was becoming terminal. He was totally reliant on us and others for his physical care. He was unable to walk, feed or wash himself, and was doubly incontinent. By now dad required care 24 hours a day 7 days a week.

Dad had always made it clear that his wish was to remain living with me. As his physical condition worsened this request became increasingly important to him.

“The strain took its toll, and I began suffering from stress“

But the strain took its toll, and I began suffering from stress. My oncologist was concerned about how this was affecting my physical health and recovery.  It was then that NHS Doncaster suggested I participate in a personal health budgets pilot.

A worker called Gill from their Continuing Healthcare team sat down with me and went through all the relevant documentation.

First of all I completed a self assessment questionnaire on behalf of my dad. This was where I listed all dad’s health and social care needs. Gill helped me out with this. Included in the questionnaire were sections on my personal circumstances, the care needs for my dad and the support he was then receiving.

This questionnaire was returned to NHS Doncaster. Using a formalised budget-setting system, NHS Doncaster decided the personal health budget my dad was entitled to. I had to wait about two weeks to receive this.

Based on dad’s overwhelming wish to be cared for at my home, it was decided that the home visits for dad would continue. Plus, I would have an additional amount per week to spend on flexible care hours for dad.

So, together with Gill, I drew up a care and support plan on behalf of my dad, which everyone involved agreed on. Importantly, I was able to choose a care agency and organise care when I was away at work, out with my son or for general respite.

I was also able to “bank” care hours to use when required. This helped reduce the number of emergency calls that had to be made, or having to find alternative carers.

One of the things I did was to make sure care was provided for dad every Saturday between 11am and 4pm. This was my first opportunity to take my 13 year old son out on a weekend for over two years. He was able to take up a new hobby which he enjoyed tremendously. As the main carer as well as a mother, this made a massive difference to my quality of life and my son’s.

“What was so good about the personal health budget was that I could make sure care was flexible“

What was so good about the personal health budget was that I could make sure care was flexible. The agency I chose proved to be reliable.

Moreover, the agency took over some of my previous informal tasks. And if there was ever a problem while caring for dad the agency would, for example, contact dad’s GP directly rather than interrupt me at work unless it was urgent. This relieved me of immense pressure.

I found it extremely useful to know how much care costs per hour. Plus, with a personal health budget I could choose the agency to provide dad’s care. I had much more control than previously.

Dad died on 23 December 2009. In the end he only received his personal health budget for two and a half months. However, the pilot scheme helped transform our lives beyond recognition.

Had the personal health budget not been in place I would never have forgiven myself if I had been forced to move dad out of my house and into a nursing home.

“I was a valued participant in organising care for my dad“

The personal health budget worked well for me because I felt in control. Previously it felt as if care was “done to us”.

A personal health budget made dad and I feel as though we were valued participants.