What if we viewed lived experience as an asset? As an asset of professional, economic,…
6th September 2014
I recently transitioned over to a Personal Health Budget from Social Services Direct Payments and we are still sorting out the funds and what I need as my needs are increasing greatly year on year. Direct Payments worked well for me for four years because my needs were greatly social and respite for mum, but now my health needs are too much for a carer unless my mum continues to do my nursing care (TPN, IV drugs, injections etc.). Of course, this means mum has no break, and she has to fit everything she needs to do into 3 hourly slots. This is no life, bearing in mind she hasn’t had a proper break in almost 7 years of me being ill. So, we are going to need to increase my Personal Health Budget with Continuing Health to cover nursing, which Direct Payments could not cover as it’s a health need, not a social one.
I am under hospice care, but the only inpatient hospice respite that can cover my needs is over 3 hours away in Winchester, which is stressful for mum as she has to pack everything and she doesn’t want to be 3 hours away from me as she can’t visit – much as she needs a break, she doesn’t want to be that far away and to not be able to visit should she choose, or should I be taken ill, so she ends up staying locally so she can visit but still have a break. More to the point; I want to stay in my own home. I don’t want to go away somewhere where I don’t have everything I need where I need it and whenever I need it. I want to have as minimal disruption as possible. Also, it means I can stay at home with Molly, still walk her when I choose and we won’t have to pay for her to go to the dog sitter, or mum can take her to her friends with her. Mum can then either stay at home and spend time with Vicky without having to do any of my care, or she can stay with a friend and have a complete break, but still pop in and see me as and when she chooses, and she’s only round the corner if I need her or I am particularly poorly.
Is it too much to ask to stay in my own home? Surely it’s much more cost-effective than having to pay for the inpatient respite? Care to me is having what you need, when you need it, where you need it for as long as you need it; and I need nursing care 24 hours a day – with all the IV drugs I need, getting up in the night, wound care, bag changing, flushing catheters, dressing changes….the list goes on. You could say I just have the nurses in during the day, but what if I need IV Paracetamol or another drug in the middle of the night? What if my stoma bag leaks? What if my TPN pump alarms? What if my catheter needs flushing? Not all of these can be dealt with by carers.
The whole point of me going onto a Personal Health Budget was to meet my ever-increasing nursing needs. Personal Health Budgets allow me to choose who I want to employ, have control over when I have that care and allow me to pay for things that will improve my quality of life – like nurses to give mum a total break. It gives me choice, and I can’t tell you how important this is to me. The reason we didn’t transfer over to Continuing Health before and why we held onto Direct Payments for so long was because I had choice over who I employed. Personal Health Budgets are supposed to be like Direct Payments but for health budgets. You get choice over where you get your care from/who you employ, you have total control so you can build your own team of carers/nurses. This ensures continuity, which is especially important to me. I don’t want any Tom, Dick or Harry coming in and doing my most intimate care needs. I want – no I need – control. I have so very little control in my life, so being able to control who cares for me is of huge importance. Would you want just anyone coming into your home, spending hours with you every day and doing your most intimate of care needs? You wouldn’t, you’d want to be able to choose and have a team that you like and get on with. I have had carers in the past who I just didn’t click with, and that can be quite uncomfortable when you are putting your life in their hands and spending hours with them on a regular basis. The care of carers and nurses is unlike any other job. You are coming into people’s own homes, which involves the whole family. The relationship between employer and employee is a lot more intimate than it would be in the majority of work places. They need to fit in with the whole of the family because much of their time will involve normal family life. The 6 C’s of care are Care, Compassion, Courage, Communication, Competence and Commitment, and the important C’s to me are Control, Choice and Continuity.
We will get the budget right for us in time. We will change the inpatient respite at the hospice for funding for nurses in my home, and start build a team that works for me – and mum and Vicky. Mum needs to have people she trusts who are competent enough to look after me, and Vicky needs to be comfortable with them when they’re here for such long periods. And then there’s me; I need people who can do all my care needs, understand me, what I want and why, and who I am comfortable with.
This new venture into Personal Health Budgets enable service users the freedom of choice. The ability to choose the right team of nurses, who the service user and their family trust and feel comfortable and confident with. The choice of when that help is provided, what help is needed and where it is provided (i.e. in the home, in the community, in hospices and respite centres). The freedom to choose how their budget is spent and so importantly, the freedom for the service user to be as independent as they wish.