Following on from my first blog in which I spoke about my accident, my personal coping strategies and my mental health, I am now going to focus on the care arrangements we had to look at to allow me to come home from hospital.
When I left the Spinal Unit in Sheffield after 8 months, I was fortunate enough to be discharged to Lascelles which is a rehab unit in Harrogate, just 10 minutes away from my family home. There was another option of rehab centre but is was in Sunderland. I had been in Sheffield for 8 months and my family had travelled to me every day, so we wanted to be closer together. At this time, I was also appointed a Care Company, based in the Midlands area, who were to provide me with 24/7 care, by the local Clinical Commissioning Group (CCG). The plan was for them to carry out their staff training etc. whilst I was at Lascelles ready for me to move back to my parents’ home.
I never wish for my writing to be seen as negative and I always try to look for the positives in life, but things were not always easy or straightforward at all coming home and I would not be being truthful if I said that they were. I aim to be honest about my experience in the hope that I can provide some advice and solutions to others.
On reflection, the location of the Care Company in relation to where I lived was one of the contributing factors as to why we ended up parting company with them after 5 years. I wish that as a family we had expressed our concerns at the beginning, asked the questions, explored the options, but as the situation we were in was all new to us, we found ourselves agreeing to the first idea.
So, here’s the honest bit…
I did experience a number of difficulties with the first Care Company we used. The location of the Management Team meant that they were not based locally to manage the team. The aim was to take away some of the stress my parents had been under, but with no Management around to deal with people not turning up for shifts or being left without a vent trained person on shift, my parents had to step in. Don’t get me wrong, my parents had agreed for me to come home to their house and were committed to helping to look after me, but not knowing when they may have to cover from day to day was a constant worry and the impact that it had on their lives was huge. On occasions, my mum would cover a waking night shift and then have to stay awake to cover a day shift as no one turned up. It was hard on my parents needing to always be liaising with the Commissioning Group as to the companies failings and the constant worry that staff weren’t trained in complex care. I understand now why my parents kept a lot from me so I didn’t worry or so it didn’t impede my recovery.
Someone with the level of clinical care I need can be quite daunting. Having the right team of staff who are fully trained and supported, not only boosts their confidence, but also that of the individual they are providing care for. One occasion I will never forget was when my mum was leading on a planned trachy change, asking for the tape, for the carer to go out of the room and come back with some Sellotape. It wasn’t the staff’s fault; they just hadn’t been trained properly. We felt sorry for them as they shouldn’t have been put in that position. It was just a good job that it wasn’t an emergency!
We swapped care companies and did have a few good years, but changes occurred within the company which sadly set us back again. My dad then found himself in a position of being the one to practically take the lead on running my care as a result of these changes. So last year, as a family, we decided to go down the Direct Payment route. My dad approached our local CCG on my behalf who fully understood and supported our reasoning to make the move to Direct Payments. This helped to give us the confidence to make the change. We had input from our local CCG and Direct Payment Team within Social Services throughout the process.
Although it was something completely new to us as a family having the responsibility of employing staff, training staff, rotas etc., it has taken a lot of stress away, made it a lot easier for us as a family and has given me personally a lot more flexibility in my life, which at a time where I am going out a lot more to my talks and events, is a huge positive.
My advice would be to explore all the care options available.