Personal Assistants or Agency Staff: My Journey to Gaining Independence
The start of care in the community
I have depended on care in the community ever since home leave from hospital at the age of 16. However, my care was on a more permanent basis after I came home at the age of 21. This was after spending 4 years in hospital and 1.5 years in a neurological unit and care home.
Initially, I had continuing health care which included a 24-hour nurse and carer from an agency. I had high medical needs and was dependent on then for every aspect of care and life in general. This was hard, as a teenager and young adult I should have been gaining independence, whereas I had lost all independence and virtually had none.
Then, as my needs reduced, I just had agency carers during the day and night. After being reassessed and deemed no longer eligible for continuing health care I was transferred to social care. Under social care, I have direct payments and employ my own Personal Assistants (PAs). It has been like this for 5 years, with a team of PAs who do regular day and night shifts each week.
Switching to Personal Assistants
Employing PAs works well for me and us as a family, there is continuity and my PAs know how to look after me. There is also a degree of flexibility. In contrast, with agency care sometimes a carer would come one day and never be seen again. I would spend the whole day explaining what I needed and how to do things to avoid added pain. This was physically exhausting and I only achieved half as much as I wanted to. Some weeks I could have several new people and was constantly going through this process. Having PAs also cuts out the middleman, as you can talk directly with the person rather than through the agency.
On the downside it can be tricky to find the right support. You are in charge which has its pros and cons. Sometimes I have found this difficult. They are helping me with personal care, which is so intimate, yet you need to hold the authority of being the boss. Furthermore, you want to get on with them, being a friend whilst professional as well. It is a really difficult relationship. Sometimes I feel that I don't have the authority as much because of my age. I am in my 20’s and they are older than me.
There is a lot of work involved employing PAs from advertising, recording hours, submitting them to the payroll company, paying PAs, pensions, arranging holiday cover to name a few. With an agency they cover all of these things. This may sound easier, but in reality it was very stressful.
My PAs help me achieve a better quality of life, they support me with personal care, physiotherapy and transfers to name a few.
My support is varied and does involve my family
I also get a huge amount of support from my parents. Particularly, my mum. People often ask, what does she do, you have PAs that look after you? Well, she actually does an awful lot! From looking after me when I don't have a PA, to helping my PA on the several days a week when I need the support of two people. The list could be a page long: taking me to physiotherapy, swimming, work experience, hydrotherapy, oxygen therapy, hospital appointments. Let’s not forget seeing my friends. There also are mountains of emails and administration jobs which include PA payroll, ordering my medications, washing my clothes, cooking meals, arranging services for equipment and many other battles.
My Dad pumps up my wheelchair tyres as well as maintaining my powerchair and manual chair. He also maintains and washes my wheelchair accessible vehicle to name a few. I am so lucky to have amazing parents, who are so supportive and do so much for me.
Do you receive any care or support in the community? Do you employ your own PAs? How do you find them? Let us know in the comments below!