Vivek’s challenge with finding a personal assistantBy Vivek Gohil -
Living with Duchenne Muscular Dystrophy is an increasingly complicated task; as muscles deteriorate you can lose the ability to perform simple daily tasks. Care packages and personal assistants (or carers) become an integral part of how we live an independent life.
Initially I found it emotionally challenging to admit that I needed assistance for simple tasks. It felt like I was giving up on independence or an intrusion of my personal space. However, now I can say care has increased my independence, allowing me to socialise with friends and rely on myself rather than my Mum.
I have experienced all the wonders and pitfalls of using care agencies. I've changed agencies about 6 times and always face similar issues of staff consistency, lack of time flexibility and staff not allowed to perform my increasingly complex care like CPAP ventilation, medication or PEG feeding.
Recently I am using the newly formed Personal Health Budgets (PHBs), so I have a pot of money to spend on my healthcare with apparently greater control or choice. I can employ anyone to become my PA, specifically train them, set flexible hours and provide higher pay.
PHBs are theoretically the perfect way for managing your care package. However it automatically assumes that you are a recruitment expert, interview specialist and employer with prior training.
Initially I did manage to find the right PA, it was brilliant as it allowed me more independence. For example, I was capable of working for 3 days at the MDUK London HQ whilst staying in a nearby hotel. As my hours increased to 40 per week, my PA was only available 3 and a half days a week. This issue seriously limited my independence as I needed the hours spread out over a five day period to carry on with my life
Eventually, I decided to dismiss her partly due to a lack of confidence as an employer, meaning the personal and professional barriers were easily crossed. It’s important but difficult to maintain a balance between relaxed working atmosphere whilst also retaining authority. The problem with relying on a single PA is that during the dismissal process you are left without care until you find a replacement - which is the predicament I am in at the minute. Luckily my Mum is my backup but I don’t like to tire her out or intervene with her life.
I’ve advertised for PA’s via Leicester Mercury, Indeed.com etc but had 2 applicants that did not turn up on the set interview date. On a positive note, this has given me time to be prepared with value based questions or scenarios during the interview stage. I want to find the right PA with a personality that gels with mine as I will be spending a lot of time with them.
Finding the right care will be an ongoing process.
To be continued...