Robyn’s story

Robyn had a spinal injury in 2006, at the age of 21, which left her tetraplegic and needing 24 hour care. When she was discharged from hospital, her care was managed by a home care agency which specialised in spinal injury, and they provided live-in personal assistants (PAs) who would work anywhere between 24hrs and three weeks at a time. Robyn’s care package was jointly funded through Continuing Health Care (CHC) and the local authority, and initially it worked fairly well.

Over time, the care agency expanded significantly, and they struggled to recruit and retain staff. This meant that they were often unable to provide suitable PAs, and it became a case of having any PA in place, so that Robyn at least had her basic needs met and was “safe.” In 2014, her last full year with the agency, Robyn had 36 different PAs providing her care. Robyn was increasingly finding that even getting out of bed safely was a challenge, let alone being able to leave the house or do anything with her day.

Prior to her injury, Robyn was a very active person, who owned and worked with horses, had a busy social life, and was always “on the go.” Robyn’s life still very much centered around animals post-injury, with several animals at home, and two small ponies who live a 15 minute drive from Robyn’s home. The care agency would regularly send PAs who were either allergic to or terrified of animals, or who couldn’t drive, so Robyn couldn’t get to the stables. There was little forward planning in managing her care, and Robyn would often not know who would be arriving the next day, or how long that PA would be staying. She was unable to make plans or commitments, not knowing if she would have the right support in place on any given day or week. High staff turnover resulted in little continuity of care, and her health suffered as a result.

In May 2014, Robyn approached her social care and CHC teams about leaving the care agency, and ideally, being able to employ her own PAs. A personal health budget (PHB) was suggested, and the CHC PHB Nurse came out to meet her, and discussed how a PHB might work for her. They looked at Robyn’s care needs, at what was (and wasn’t) currently working, and at what Robyn hoped to achieve with her PHB.

Robyn wanted to be in control of her care – she wanted to be able to employ her own PAs directly, and choose the people who not only provided her care, but who lived with her for 24hrs a day. She wanted to have regular PAs, working regular shifts, and she wanted to have the right support in place to enable her to do more with her life.

Once an indicative budget was set, based on Robyn’s care needs, and they had developed Robyn’s personal care and support plan, Robyn was supported by her local Personal Budget Support Service (PBSS) through the recruitment and employment process. Her PHB went live in November 2015, and Robyn left the care agency.

Robyn found the PHB process quite daunting, and although she was supported by her PHB Nurse and the PBSS, the length of the process (18 months) meant that there were long periods where she had no contact and no knowledge of what was going on. She also feels that an opportunity to speak to other PHB holders, who had been through the process and were managing their own PHBs, would have been beneficial in helping her to understand her role in managing it going forward.

Robyn’s original care and support planning process wasn’t a particularly well supported or personalised process, and resulted in a plan that, while sufficient to get the PHB up and running, didn’t make sense to Robyn, and didn’t capture Robyn as a person. Robyn rewrote her plan herself, as her confidence in managing her PHB increased, and she continues to work in partnership with her PHB Nurse to explore ways to increase her independence, such as delegating further health tasks to PAs to reduce reliance on community nursing services.

Robyn has now held her PHB for three years, and employs her own PAs through a direct payment.  She employs two full-time live-in PAs, who work on a weekly rota, and her current PAs have been working with her for 18 months and two years. She is registered with a care agency as backup, and also subscribes to a PA/Employer recruitment website. Robyn feels fully supported with the responsibilities that come with being an employer, with the local PBSS processing her payroll and access to good legal support through her employer’s insurance.

Being able to take control of her own care, and choose the PAs who provide her support, has transformed Robyn’s life. She is able to work part-time and is self-employed, running her own holistic animal business and working with NHS England’s Personalised Care Group, using her experience (as a member of the Strategic Co-Production Group) to help inform and influence policy and help co-produce services. She also carriage drives competitively, and is back to having an active social life. She describes her PHB as having given her life back.

This year, her third year with her PHB, Robyn has seen five PAs providing her care – two regular PAs, plus three to cover annual leave. This continuity and quality of care has had an enormous impact on Robyn’s quality of life, both physically and emotionally.

“My PHB has meant that, for the first time since my injury, I am back in control of my 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 can honestly say that I would never go back to the way things used to be.”