Case study summary
Christina is 20 and lives with her family in Leeds. She has a severe learning disability, autism and Lennox Gastaut syndrome which means she has life-threatening epileptic seizures on a regular basis. The seizures occur mostly at night but can also happen during the day. When she has a seizure, the neurologist’s care plan says she must be given two different rescue medications rectally straightaway by two trained care givers.
Her family have always been trained to give her the medication, and she had registered nursing support at home seven nights a week and at certain times during evenings and weekends.
Leeds Transport Services took Christina to college, and she was supported by a family member trained to administer her rescue medication as escorts from transport services were unable to do this.
When she was 18, Christina transitioned from children’s to adult services and her funding moved to Adult Continuing Healthcare (CHC). In Leeds, learning disability services have a joint budget which includes health funding from the Clinical Commissioning Group (CCG) and is managed by Leeds City Council. Under a local agreement, the council’s Adults and Health team assess the needs of people with a learning disability, provide care management and develop packages of care for everyone.
When Christina was turning 18, her care manager had suggested a personal health budget (PHB), but the family didn’t feel ready for such a big change.
Christina’s support package transferred to a nursing agency and she was looked after by a team of agency nurses and healthcare support workers. Some of the nurses had already worked with her and transferred to the agency when she became an adult. This continued for 18 months but issues began to emerge, including problems recruiting nurses, covering shifts and Christina and her family not being happy with all the staff.
The care manager revisited the discussion about whether there was a better way to provide and manage her care. The family decided that a PHB would give them the flexibility to provide the support that was right for Christina.
Recruiting the right staff
A PHB means the family and care manager can be more creative and flexible with Christina’s package of care. They employ Christina’s nurses and healthcare support workers directly, which saves money on agency fees. They interviewed the candidates themselves and made sure Christina liked them.
In agreement with the agency, some workers who transferred directly onto the new support package. The family member who was escorting Christina to college was also employed. A small number of management hours are included in the PHB package, which allows one of the personal assistants (PAs) to arrange the rotas.
Until now, Christina’s epilepsy interventions could only be given by the qualified nurses. Several of the unqualified workers were familiar with Christina’s needs, and were given training by the nursing staff and outside agencies to also give Christina her medication. The nurses provide ongoing training and supervision, and a training budget has been incorporated into the support package.
The family are supported by the Leeds Centre for Integrated Living (LCIL), a local organisation funded by Leeds City Council. LCIL help the family to advertise for and interview the support workers and provide their mandatory training, such as first aid and handling. They manage the bank account for Christina’s support, which means that the family don’t have to worry about or handle any money. This is really important to the family.
Christina’s travel to day services and college were costing hundreds of pounds a week as she needed a specialist private hire vehicle at specific times. Following a review, Christina is now using her PHB to employ her PAs to drive and escort her in her own mobility vehicle.
The arrangement has been working so well that the family and care manager have been able to reduce the amount of nursing support that Christina needs. She now only needs nursing support three nights a week, with trained personal assistants working the night shifts the rest of the time. Again, this has been more cost effective.
Better respite care
The PHB also allows everyone to be more creative in providing better respite care. Christina was attending a specialist respite resource, but it wasn’t meeting all of her needs.
The care manager suggested a more personalised arrangement where the PAs support Christina in her own home whilst her family go away for the weekend, or she goes with her family for a short break away. This happened for the first time a couple of months ago. Christina was able to stay at home, where she felt more comfortable, and the family could have a proper break. This was the first time they had been on a weekend away since Christina was born.
Helping Christina to flourish
Ten months on, Lynn Dunion – Christina’s Transitions Care Manager who is also a registered learning disability nurse – says that it has worked really well for Christina: “She’s flourishing and the wellbeing of the whole family has improved.
“Before I would regularly receive calls from the family about things they were concerned about, sometimes every day. Now, the calls are much less frequent as the family are able to manage things themselves. Often they will call just to clarify that decisions they have made are appropriate, which they have been.
“It is much more cost effective. None of the money we spend is going to a nursing agency; it all goes directly to the staff. The package is innovative and creative and provides Christina with a more personalised package of care. Her family, with support, have been able to develop their skills and confidence to manage the package independently. It has empowered them to have the choice and control to meet Christina’s complex needs and improve her wellbeing and quality of life.”
Christina is now much happier. She has just transferred to a local day service close to her home which she attends five days a week. She’s very sociable, her favourite activity is colouring and she thrives with the positive interaction she receives from her PA team.
Christina’s health remains complex. But due to the high quality of the service she is now receiving and the fact that her PAs have developed very positive relationships with her and are extremely in tune with her, they are able to quickly respond to her needs. Christina has not needed an emergency hospital admission since the new arrangement began.
Being more confident to commission PHBs
Continuing Healthcare Co-ordinator, Lynn Richardson, says the success of Christina’s story has made her more confident in commissioning other PHBs: “We’ve learnt what contingencies to include in a care package, such as management time and training.”
“It’s a big responsibility for a family to take on, and we need to listen to each individual family and make sure they are ready. LCIL provide good support and help the families to feel confident.”
Lynn Dunion agrees: “It can be complex to set up initially and requires intensive input from the Care Manager, but once it’s up and running it’s much easier for us to manage. The outcomes are much better as the control is given back to the family. This package was extremely complex, but I feel proud of the work that we have done.”