Jun 20

What matters to you

Posted: 9 June 2020

On this year’s 'what matters to you' day, Rob Moriarty reflects on how his care package is enabling him to get the support he needs during the current pandemic.

Over the last 22 years I’ve grown accustomed to living life with a high-level spinal injury, depending on 24/7 support from carers and personal assistants (PAs) to manage all aspects of daily living. Whilst many say Covid-19 will fundamentally change our way of life, it's so far reinforced many practices I’ve already had in place with my care, care which fully recognises that what matters to me as an individual is key to me getting the right support and staying well at home.

I’ve received direct payments since 2005, which means I’ve taken control of my own care to employ my own team of PAs. Through my personal health budget since 2014 I've further reduced my previous dependency on nearly two hundred district nurse visits each year, taking it down to an average of 7 per year.

Having the choice, flexibility and control to do these when I want to rather than fitting in with their service really matters, and it's fundamentally changed my life. It's restored my sense of dignity and independence, allowing me to get on with life personally and professionally.

What is important to me right now is living as independently as I have over recent years. It matters greatly to me that friends and family visit when they choose, rather than out of a sense of obligation. This pandemic has highlighted how well-timed, proactive and effective the personalised care and support planning process was as part of the set-up of my personal health budget, in order to make these things possible.

Because of my personal health budget, I’d already thought about contingency planning and managing potential scenarios around employing personal assistants (PAs) such as possible absences.  Fortunately, this has stood me in good stead for managing the current crisis.

As I’ve not been “shielding”, my focus has been on sensibly restricting ventures outside to essential supply runs and getting fresh air where I know I can safely keep my distance from others. There's a local supermarket nearby for buying food, and I always have a three-month supply of medications.

Understanding my vulnerability and the need to avoid any spread of coronavirus, my PAs have kept my flat cleaner than usual, taking shoes off and washing their hands thoroughly every time they enter (singing happy birthday entirely optional), steam cleaning floors, disinfecting work surfaces, bathrooms and regularly used items (light switches, TV remotes, door handles) on every shift, optionally leaving a set of clothes they can change into the next time they're here.

I’ve setup a WhatsApp group so my team of PAs can chat with each other more easily, particularly if any last-minute cover is needed. This is something I could have put in place years ago and will keep going forward. As a backup I’ve contacted six former PAs who've said they’d be willing to help cover as needed. It’s a huge relief to know they could slot back in to the team, far easier than searching for new recruits.

I’m sharing my story today to encourage professionals across health and social care to consider which matters more: being “kept alive” by the system, or having a “life worth living”? I think you know my answer. Asking “what matters to you?” can help more people like me get the care and support that’s right for them. Without this type of care package in place, navigating my way through recent weeks doesn’t feel like it would have been possible.

Background and bio

Tuesday 9 June marks this year’s What matters to you day, a yearly opportunity to encourage staff across health and social care to ask this simple question to help people get care and support that’s right for them. Follow what others are sharing #WMTY20 #PersonalisedCare

Rob Moriarty is a 38 year old businessman based in Leeds. He has over two decades lived experience with a high-level spinal cord injury, self-managing his 24-hour care through a range of personalisaton schemes since 2005. He’s received a personal health budget, a type of personalised care and support centred on people’s individual needs, since 2014.

Rob is a member of NHS England and NHS Improvement’s Strategic Co-production Group, as part of the Personalised Care Group.