Building on a people’s movement for change…

Robyn’s Story

In 2006, at the age of 21, my life was turned completely upside down. I had a car crash and broke my neck, sustaining a spinal cord injury which left me tetraplegic and needing 24 hour care.

I spent 15 months in hospital, and when I came home, my care was managed by a care agency which specialised in spinal injury, funded jointly by Continuing Health Care and the Local Authority.

The agency provided live-in PAs who would stay with me for anywhere between 24hrs and three weeks at a time. The intention was that I would have regular PAs working with me, and that I would be sent a variety of PA profiles ahead of time so that I could choose who I wanted to come in and provide my care.

My Original Care Package

Initially, the care package worked fairly well. The agency was quite small and had an almost “family” feel to it – I knew everyone who worked in the office, I often had regular PAs working regular shifts and, although I never really had much choice in who they sent to me, they were fairly good at matching PA’s personalities and values with my own.

Over time, the care agency expanded significantly. They struggled to recruit and retain sufficient numbers of PAs, and were frequently short staffed. This meant that they were often unable to provide suitable PAs, and it increasingly became a case of having any PA in place, so that I at least had my basic needs met and was deemed to be “safe.” I was finding regularly that even getting out of bed safely was a challenge, let alone being able to leave the house or do anything with my day.

Prior to my injury, I was a very active person. I owned and worked with horses; I had a busy social life, and was always “on the go.” My life still very much centres around animals post-injury, with several animals at home, and two small ponies who live at a stables 15 minutes away from my home. My ponies are my world. I do sometimes question my sanity when I’m battling my way to see them through snow or driving rain in the depths of winter, but they have been – and are – my reason for leaving the house every day, when life can seem impossibly challenging at times.

The care agency would send me PAs who were either allergic to or terrified of animals, or who couldn’t drive, so I couldn’t get to the stables. There was little forward planning in managing my care, and I would often not know who would be arriving the next day, or how long that PA would be staying. I was unable to make any plans or commitments, not knowing if I would have the right support in place on any given day or week. I spent my life worrying about who would be arriving next, and often having to accept that, when I had an unsuitable PA in, I would just have written off the next few days and hoped the next PA would be better. The high staff turnover resulted in little continuity of care, and my health, both physical and emotional, suffered as a result.

Taking control

In 2014, I reached a point where I contacted my social worker and Continuing Health Care team and said “I can’t do this anymore.” I wasn’t living, I was existing. I missed having any kind of life, because my care package was not working.

I wanted to be in control of my care – I wanted to be able to employ my own PAs directly, and to choose the people who not only provided my care, but who lived with me for 24hrs a day. I didn’t want anyone else to be dictating what I could and couldn’t do anymore, and I wanted to have the right support in place to enable me to have a life.

I met with my social worker and CHC nurse to assess my current care package, and a Personal Health Budget (PHB) was identified as a potential way of achieving more choice and control in managing my own care. A PHB nurse came to meet me, and we discussed what was, and what wasn’t working, and how a PHB could work for me. Based on my care needs, an indicative budget was set, and my care and support plan was completed.

I was supported through the recruitment and employment process by my local Centre for Independent Living (CIL). It was all very daunting, writing a job description, sorting through applications and interviewing potential PAs was all very new to me. I was very grateful to have the support from my CIL and to have someone to guide me through the process, but it would have been helpful, for me, to have had an opportunity to speak to another PHB holder who had been through the process, to understand how their PHB worked for them, and to allay some of my concerns. It’s all very well having nurses and advisors tell you that everything is fine and it’ll all work out, but sometimes a bit of peer support and a chat with somebody who has been in your position can make a world of difference!

The whole process, from my initial call to my social worker to my PHB going live, took 18 months, and there were long periods when I had no contact with anyone and had no idea what was going on. I had to do quite a lot of liaising between the social and CHC teams, which was frustrating, and there were times when I wasn’t entirely sure that they knew what was going on either!

However, we got there in the end, my PHB went live in November 2015, and I left the care agency. I remember very clearly, about 6 weeks beforehand, having a complete panic and wondering if I was doing the right thing. I had a set date when I would leave the agency and take over complete control for my care, by myself, and it was a terrifying prospect. What would I do if it all went wrong? I needed to try though. I couldn’t keep going as things were, and I knew that unless I took this leap, nothing was going to change.

My Life Now

I have now held my PHB for three years, and employ my own PAs through a direct payment.  I employ two full-time live-in PAs, who work on a weekly rota, and my current PAs have both been working with me for about 2 years. I am registered with a care agency as backup and for annual leave cover if needed, and also subscribe to a PA/Employer recruitment website – if and when needed, I haven’t needed to use that subscription in the last 18 months!

I am fully supported with the responsibilities that come with being an employer, with the local Personal Budget Support Service processing my payroll, and access to good legal support through my employer’s insurance. My original care and support planning was done through a broker, and wasn’t a particularly well supported or personalised process. The resulting plan was enough to get my PHB up and running, but it didn’t make a lot of sense to me, and it didn’t capture me as a person. I have rewritten my plan myself from scratch, as my confidence in managing my PHB has increased. I continue to work in partnership with my PHB Nurse to explore ways to increase my independence, such as delegating further health tasks to PAs to reduce my reliance on community nursing services.

In 2014, my last full year with the agency, I had 36 different PAs providing my care. In 2018, my third year with my PHB, I had five PAs providing my care – two regular PAs, plus three to cover annual leave. This continuity and quality of care has had an enormous impact on my quality of life, both physically and emotionally.

Being able to take control of my own care has transformed my life, and for the first time since my injury, I am back in control of my own life. I get to choose everyone who comes through my front door to provide my care, which is fantastic. I can build good working relationships with my PAs, they know me, and they know my needs, which means they can provide pro-active support and often anticipate any potential issues. Having the right care and support in place has given me the ability, and the confidence, to get out and start living my life again. I am now able to work part-time and am self-employed, running my own holistic animal business, working with NHS England’s Personalised Care Group as a member of the National Strategic Co-Production Group, and working as an Associate with Peoplehub. I also carriage drive competitively, and am back to having an active social life. My PHB has literally given me my life back, and I can honestly say that I would never go back to the way things used to be.