Janet’s story: life with a personalised care plan

Janet Brown lives in Nottingham with her husband. She has Multiple Sclerosis, ME and Fibromyalgia. Here she tells her story of life with and without a personalised care plan.

Before 2007 I was a successful, outgoing, well-connected business consultant.  I was involved in regeneration work which I loved, I had written a book and I took every opportunity I could to travel. In short, I was loving life.

But in 2007, everything changed.  My ME suddenly deteriorated. With a number of neurological conditions overlapping, life became very difficult.  I couldn’t walk; my balance completely evaporated and I found simple tasks like getting in and out of bed unbearably difficult.

I looked to my GP to help. In fact, I looked to a number of consultants and healthcare professionals.  I was desperately clinging to the hope that I wouldn’t have to give up my job.  I needed to have a purpose in life.

My GP is very good but the only thing he could offer me was medication and the side effects of it were hugely debilitating.  I continued to accumulate more and more GP appointments until I eventually found myself embarrassed to be there.

So I retreated to my home where I became house-bound, in fact bed-bound, within two years. I lost my social links; I became isolated, unhappy and progressively more and more unwell. My muscles weakened further and I could feel myself declining into a fairly dire situation.  It’s upsetting to think back to that time because I ended up in a very dark place.

With my confidence at a particularly low ebb, I reached out to the ME Society in the hope that I would be able to speak with people via phone for support. Whilst support groups were available, regular phone contact wasn’t an option but the Society did tell me that the local Clinical Commissioning Group (CCG) were running a pilot to trial personalised care and support planning for people with ME. I realised that this could be just what I needed so I called the CCG,  which marked the beginning of an incredible journey for me.

Someone from the CCG came to visit me. They wanted to hear more about my situation and they approached me with such empathy and understanding. They assigned me a ‘broker’ – someone who would work with me to create my personalised care plan.

In our first meeting he started off by asking what was important to me; what were my core values; everything about me and my life. I was quite taken aback because those questions aren’t directly about health. But I now realise that he wanted to know what would motivate me to get up, get out and re-engage with life. When we eventually talked about the impact of my conditions, split down into physical and emotional well-being, we created an enormous cascading list, which was the basis from which we created my care plan. I found the process very easy.

Sometimes the process of care planning reveals that the person needs a service that is not currently provided. This was the case for Janet, whose CCG offered her a personal health budget as part of the care planning process. 

I was assigned a personal health budget which I was to manage myself, with some assistance, and it afforded me access to a vast range of things which went far beyond medication. Soon I was enrolled in physical therapies which improved my core strength and muscle control and provided significant pain relief which lasted weeks at a time. I was out and about, walking in a way that I hadn’t been in years. I saw a nutritionist who helped me to create a menu plan which alleviated some of my symptoms and gave me lots more energy.

Experiencing a loss of health with all that it entails can feel like a complete loss of identity and, I now realise, that the emotional effects had been having as significant an impact on me as the conditions themselves. Before the personal health budget, that purpose in life which I had tried to cling onto the early days was all but gone. When I was asked what made me happy, I didn’t have an answer. I couldn’t think of anything that would spark excitement, enjoyment or any kind of euphoric feeling in me. But my personal health budget addressed that too. As well as having relaxation therapy, I signed up for an art class – something which I had enjoyed decades before. Very quickly my zest for life returned. I found myself waking up at 3am, excited to get downstairs and begin my artwork. This year, I plan to enter a competition with some of my pieces which is quite an incredible turnaround from where I had been.

During the time that I had the personal health budget, I didn’t see my GP very often at all. Miraculously, I came off all medication and, without the side effects, felt better than I had done in years. I was managing my condition myself and it was very empowering. It was a win-win. I got my life back and the health service spent far, far less money and time on my care.

Sadly, the personal health budget pilot only lasted one year, and whilst I am trying to maintain some of what had been in place, the truth is that without the budget it is very difficult to achieve. My pain has flared back up and my balance is deteriorating. I now have a dedicated MS nurse, physiotherapist and an occupational therapist – none of which I required when the budget was in place. I see a pain consultant once a month and I am back on what I know to be very expensive medication.

Everyone wants to be well; no one wants to be sick for the rest of their days. I really believe that I have too much to offer to be bed-bound for the rest of my life. So I’ve got to fight for me and the personal health budget helped me to do that. I can’t tell you how much. It made the most tremendous difference.

 

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